How are people with liver mets doing?
Comments
-
Thank you mama2twins, you are also in my prayers ..
0 -
Sonya,
Tms sometimes go up on new treatment, and the reason could be either working or not working. But with A/A. Ii is a possibility it is from affinitor. A lot of ladies took this treatment you can check with them on the thread affinitor/ aromasin here on BCO . I am sure you will find a lot of useful information. Good luck to you.
0 -
NancyH, that is good news. I definitely think that is a great sign! I hope you get a very long run with that.In the beginning I too felt some sharp shoulder pain for a very brief time. Weird.....Now I can feel something in my side like occasional sharp little jabs but only here and there and nothing painful. Sometimes just a "fullness" feeling. But my enzymes went way up so we had my scan pushed up to today, two weeks early. Results on Monday..Hopefully it's the meds fault and the jabs are tumors dying off. Woody, may you enjoy MANY years of remission! babs, I think we all have those natural ones!
0 -
Hi everyone. First time post
I was dx with secondaries in my liver and bones in 2012. For the past 20 months I've been on Carboplatin and Gemcitabine and my liver cancers have decreased in the past 6 months but within the last week my tumor markers have gone up from the 100's to 500's. At the end of November I'll go onto Paclitaxel. I have never had any pain in my liver or bones.
0 -
I haven't been on many of my favorite threads for a while....I go to the main page & find so many topics that now I've fallen behind on keeping up with my liver mets sisters. I know there are new gals here...and Nancy, our heart & soul of not letting mbc stop life from happening!! I've missed keeping up but not missed thinking about you all, every day!
I never felt liver pain, even with a liver filled w/tumors. I hadn't felt my best but I had had diep flap 6 months earlier, worked (part time) and played w/grandkids, etc so until my bp started going haywire & was fatigued, I didn't know what was up. I gained weight & had some constipation...I don't know if any of it had to do with a struggling liver, I just knew things weren't normal. Then I had regular 6 month scans (my last dx had been 1.5 years earlier & scans 6 mos earlier were clean). This disease is so complex ...wish it were like measles...something you can see & a slam dunk to treat :-(
Yes, Artist!!! Hoping Monday's results show meds are busy at work!! Nancy...thank goodness for Red Devil (never thought I'd give it 2 thumbs up!)....My Sister Woody, missing you...I'm going to better at keeping up! I've been feeling good & being "used & abused (LOL)", which I think is a good sign. Babysitting, working at GS's school...now playing piano for Vetersn's assembly at the school concert...egads...finger neuropathy, poor vision & not playing much for 10 years means I hope the kids sing LOUD. But life is good...prayers for all to feel that in their hearts!
0 -
I"M A TRANSFORMER!!! My cancer has changed genetically to a third type, opening new therapies.
I was diagnosed stage IV in 2011 with mets to sternum and lungs. Got to NED. been through 4 treatments that all worked for approx . a year each. Now I have new liver mets. They are small, but I pushed for a biopsy…..and got a surprise! My original Stage II cancer in 2002 was triple neg. In 2011, I was ERPR+, HER-. It has changed genetically AGAIN, which is why anti-hormonal therapies stopped working! Now it is ERPR- and HER+. The good thing is that now I can try the HER2nu targeted therapies! I start Kadcyla Monday!Hoping for good things!
Julie0 -
I'm calling you Ms Optimus!!! Welcome to the world of monoclonals!!!! May kadcyla bring Ned into your life!!!!
0 -
Thank you all. My mom can be stubborn when it comes to seeing the onc about symptoms. I think it's a combination of fear and just not wanting to make a fuss. I know these symptoms scare her, but that's exactly why I think she should do something about them -- even if just for peace of mind.
She's been having bloating and feeling very full with even the tiniest amount of food. She's lost weight and has pain in her right side, closer to the back just below her last rib. It hurts when you press it and she says it feels like a pulled muscle, but it's not easing up.
She was borderline anemic before she started a new chemo last week and had just completed 10 rads to sacrum and L1. The weight loss and loss of appetite can definitely be from the anemia, but the pain and bloating has me very concerned. All of the other pain she was experiencing from her bone mets disappeared the day before starting her new chemo (go figure!) but this one in her side and back remains as does the bloating, burping, feeling full, etc.
0 -
Hi SmileyKy from a fellow Aussie, I'm also doing the Carboplatin Gemcitabine combo just finished my third round and due a scan soon. so far tolerating it quite well but have you been on it for 20 months without a break? how long were you on it before you saw results? My onc wants to give me a break after six rounds as its so hard on bloods and can also affect kidney function. However he seems to be of the school that says if we don't get results straightaway he will move on to something else. Seems these things should be given more of a chance to work. So far my bloods and kidney/function are good. What do you and others think?0
-
Artist,
Thank you so much i hope so too. I hope you get good results on monday , my prayers are with you please post when you can.
0 -
Smiley,
Paclitaxel is an efficient chemo to manage cancer, i hope you get a good run on it and for a longtime.
0 -
Jnh,
Your transforming is good news in the matter of more options. But i am surprised at the choice of Kadcyla as a first line treatment for her2 + . It is really questionable since it is all over the net that the first line treatment for her2 and the most succesful now up to date is Herceptin/perjeta/ taxotere. You see i am a transformer too and an unlikely one since i am ILC . but all of my oncs and there are four of them opted for the one I mentioned . And they were right, after three months of treatmen it got me to NED and that was a year ago. My advice to you is to ask your onc why he chose kacyla? And why not Herceptin/perjeta taxotere? After six months on taxol i was put on herceptin , perjeta only every 21 days till now. Please ask him and insist on using this combo first. As kadcyla has some success stories but not nearly close to H/P . Good luck to you.
0 -
Ronnie, it has been a long time , but i new you would be busy on being used and abused hahahahaha. I knew you were well but i have missed you . I think what you are doing is a great time spent and good for you as i am sure it is also exhausting but good exhausting lollll. So enjoy my froend and God bless you
0 -
Golden,
It seems to me that your mom's loosing weight and bloating is not due to anemia. You do not have to be thin to have anemia and it does not make you feel full . Anemia is very tiring and causes sleeplessness. Not what you mentionned. I was on carbo/gemzar for six months and it was very damaging to my blood with very little effect on my liver mets 20% dicrease only. And three months after the cancer came back with vengeance spreading to my bones as well. Liver mets rarely cause pains, it is usually the abdominal area which seems to suffer with fullness bloating which causes a little pain onsides and stuff. Please check with your mom's onc and have her scanned just to make sure there is no progression. My prayers are with you and your mom. But please do it.
0 -
Isy,
Welcome back i have not seen you post in a while. I am glad you are well . My onc told me before we started carbo/gemzar that the maximum he can keep me on this combo is 8 cycles. I barely made it through six. The last two cycels where reduced. As they damaged my blood and my platelets greatly. After this my onc decided not to do the extra 2 as he said it may be irreversible. So be careful for signs of extreme fatigue, tiredness also blue spots lik needles on the skin caused by low platelets even if i scratch. Well it is time i do not wosh to remember. I was scanned after three months of the treatment and they new from the results how much the effect will be. So after six it was discontinued. I hope it is working for you and that it dicreased your tumors greatly but evenif it is so, you cannot continue in it forever. He / she have to have a second plan for you in case you responded to keep you stable and if God forbids you did not to start you on a new one.
Please forgive me if i sound strange on carbo/gemzar i do not mean to be patronizing , i just heard the same thing from three different other oncs and other ladies. I want you to be aware so you can make an informed inquiring to your onc.
Healing lights and prayers go out for you. I hope you get good results on this combo .
0 -
Hi Woody
We e been without internet for a while, the modem went kaput you can't believe the near riots it's caused in the household. Never mind kids, us adults just can't survive without it either. Not having my iPad at my side felt like me right arm was missing. Sad I know. You are just great Woody. i so appreciate you replying with such detail to everyone individually. You are so giving of your time and knowledge which is always spot on.
Both me and onc are being very vigilant with my bloods and kidney function but saw him today, everything is good, even liver function has improved. Vitamin D is a bit low so good thing the summer is coming here and I'm near the beach! I'm feeling good on this chemo, been doing some voluntary work. In my former life I taught English and citizenship to migrants. We have several hundred Syrian refugees arriving soon to our town and I'm glad to help out while I feel so energetic.
My onc said he would assess after six cycles whether to continue because of said side effects which is why I was so surprised to hear Smiley say she had been on it for 20 months, maybe on lower dose?
Glad to hear you're still doing so well and SOOO happy to get my iPad back!
Xx
0 -
lolllll being without internet is a disaster to me also. You see i have this thing as soon as i wake up i check in here to see how everyone is doing , it is a rituel to me lolll. So i understand the frustration. I am glad your Ipad is back too , i cannot live without mine lolll.
I am sure Smiley is getting reduced dosage but even with this she cannot continue on it. As for you i am so happy you are feeling well on it and i hope you keep this energy. I am sure your doctor will k ow when to stop after assessment.
It is so good of you to spthe nd time with refugies to help them cope with a new country and a new language. Also it feels soooo good when you help others because you feel you are making a dIfference and it also it keeps your mind away from cancer and this beats the stupid cancer.
I hope life continues to be good to you and pays you back your kindness. Keep me posted. As always my prayers are all with you and all the ladies on this board.
0 -
Hi All. I posted in a different thread but thought it would be helpful to also post here. I have just been diagnosed with liver mets, and am wondering if anyone here has declined or stopped treatment, and what that has meant for you.
Also, has anyone has severe stomach problems from liver mets? In the past few months I have had trouble eating, I feel full all the time so don't want to eat. I also have constant diarrhea, lower abdominal pain, nausea, and have lost a lot of weight from barely eating. This is actually how they found the mets, from a CT. However my doctor says that she doesn't think these symptoms are caused by the liver mets, as they are still quite small.
0 -
dblc,
I am sorry you are here , it certainly isn't easy to find out your cancer has returned . But it is not the end. Your case is similar to mine . I am also ILC and HER2+ upon my reoccurrence. Some people do refuse treatments yes, but after a long battle. I did have a lot of digestive problem before my liver diagnosis and it disappeeared after treatment. The sense of fulness does comes from liver mets and the inability to eat. I had an extreme case of acid before i was diagnosed and irregular stools also and was loosing weight. My liver mets were too many with one larger . Frankly i do not think size matters.
I am sure your onc knows better than me, but to me what you are feeling are related to your mets. Even though your liver enzymes are still normal.
But i want to tell you and ask of you kindly to reconsider before you refuse treatment. When my cancer changed to HER2+ i was offered herceptin/perjeta/taxol. After three months i was clean and i am still clean since a year , thanks be to God.
I hope you and your onc reach a decision and i hope it is the right one for you. Stopping or refusing a treatment is a very individual decision. If you respond to treatment you may be able to buy more time. Stopping the treatment will entail treating the symptoms and letting nature takes it course and this also depends on your type of cancer and how fast it is spreading. Time is not the essence in this case as it depends on each individual and no one can predict any turn of events not even your doctors.
I hope you take your time and make the right decision for you. I pray and wish you health and long life.
0 -
thank you very much Woodylb for the response. I feel better that I have an understanding of why I've been having so much trouble eating.
0 -
Hi Debic
like Woody my liver mets also caused digestive problems, bloating, diarrhoea loss of appetite etc and it was those symptoms that took me to the doctor initially. The symptoms persisted with my first chemo Abraxane which is known to cause stomach upsets but it didn't work for me anyway so now on gem/carbo combo which has cleared the bowel problems. Our bodies often have a funny way of showing us there is something wrong and without those symptoms I'd probably be sitting here blissfully unaware that the nasty C was growing inside me.
If you read through this thread you'll see there's loads of options and lots of people doing really well with liver mets. All the best to you whatever you decide
0 -
Hi all! I have a few questions please. I have also been dx'd with liver mets. More than 75% involvement in my liver, one in L lung, R breast and so many lymph nodes I lost count. Saw my MO in March and she found nothing. I found the breast lump in August and was scanned to find the rest in September. I did have liver pain and enlargement that I could palpate. The pain was exactly where Golden's mom describes it, and also had the fullness and bloating that she describes. I went to my PCP and she said I had lost 10 pounds since I last saw her. I have since lost 5 more without trying. I am not overweight and realized pants fitting looser, but abd girth seemed to not change. I believe it was there since a small spike in TM's in January. Anyway, I was interested in Woodylb comment about the first line being Kadcyla, as this is the drug my MO chose to start me with also. As I see in jnh's profile, she has rec'd a taxol (taxotere) for the original treatment. That was my original also, so I was told by my MO that was why she chose Kadcyla. I have had two tx's with Kadcyla and so far I cannot tell if it is working. She has said nothing about rescanning. When should that be done? And how long should this drug be given? I keep forgetting to ask this stuff. I do not feel a difference in the breast tumor. The liver enzymes initially dipped but my ALT is 958 now. TM's were down to 1650 from 2059 with the first infusion. Because of the liver pain, I am meeting with a pain specialist to be considered for an implanted fentanyl pump as I am allergic to all other opiod pain meds.
Wishing everyone a good weekend. Any input would be appreciated.
0 -
Hi Deblc. You symptoms are the same ones I had along with some acid reflux. Thought I was taking too much anti-inflammatory for too long due to sciatica. My doctor's first thoughts were to change the anti-inflammatory and have an ultrasound because the symptoms were so similar to gall bladder symptoms. Had the ultrasound and went in to get the result planning to schedule gall bladder surgery. Wham - innumerable liver mets, as the pathologist said "too many to count". I have managed nausea with Zofran (worth its weight in gold), diarrhea and abdominal cramping with Lomotil, and pain with Hydroco/APAP 5/325 and Morphine when it is really bad.
I was on Faslodex and developed a couple of small bone met so Xgeva was added. Bone mets haven't been a problem and side effects were tolerable. Some fatigue and nausea but felt much better. After 7 months of Faslodex I was feeling worse so chose to add Ibrance. I am on my first cycle now and feeling better with no serious side effects yet.
I think a decision to stop treatment is a very personal one based on many factors. I've already told my doctor that I don't intend to go on any infusion chemotherapy. I'm not sure I will even try other oral ones if the Ibrance becomes intolerable or stops working. I am only 62 but have led a long and very full life. I don't have children or grandchildren. My partner of 36 years fully understands and supports the way I feel. If chemo is going to make me so sick that I can't get outside and do some things, walk my dog, etc. I will not use it just to extend my life 6 months or so. I have already made too many compromises like camping and hiking, managing my landscaping, etc. I guess overall I'm saying I believe in quality of life over quantity. My biggest regret right now is that I don't live in a state that supports assisted suicide. But, I just don't feel up to a move and I love my home.
I know many women on this board have very different opinions and have tried every available option and continue searching for other treatments and hoping for breakthroughs. They have been through some difficult treatments and never regretted it. I respect their strength and fully support their decisions. I equally support the decision of someone who declines further treatment. I think there is only one thing we all probably agree on - having metastatic breast cancer sucks. I wish you and all of the rest of us the best with the decisions we have to make in the future.
0 -
Just a brief follow up I thought of concerning abdominal pain and diarrhea. Since I wasn't feeling like eating I was using a lot of yogurt and dairy based protein shakes for nutrition. My doctor suggested I back off so many dairy products and that has really helped eliminate a lot of the diarrhea.
0 -
Sarah that's exactly how they found my mets too. CT scan done due to the stomach problems and being unable to eat for four months. I still didn't believe it was caused by the cancer after I was diagnosed, thought it might be ibs or something like that, but from the responses here I realize that it is a symptom. Even though my oncologist told me it wasn't. Why do these doctors never seem to know what side effects of anything are?????? I have learnt so much more on this board than from my doctor !!
I think we are very much on the same page re quality of life. I have read everybody's posts (in another thread I started asking about their experiences)over and over, and I think I really have decided no chemo at all. I kept a diary during my first set of treatments, and at the time I told my husband that I was never doing it again. I think you forget how bad it was, but that diary reminded me. I don't see the point of living like that. As you say, many (most?) people do treatments over and over and suffer the side effects etc. These are brave brave women. I am not so brave. So far, apart from the stomach issues, I am not doing badly. Mostly I am very tired and weak (probably more from not eating, than from the cancer) , yet I am SO TIRED of it all....of feeling sick . When it gets worse, and I know it will, I don't know how I will get through it.
Re assisted suicide....I feel very lucky that that option is open to me. I do not want any long drawn out pain and suffering, not to mention how hard it is on the family. My only fear is that I would get too sick to travel to take advantage of it, as I currently do not live in the country where it is available.
The truth of the matter is, I don't feel I have it in me to fight. I am SO TIRED!!! I can't walk two steps without being short of breath. I can't enjoy food, my stomach hurts every time I eat. I don't want to go anywhere or socialize with anybody, because I feel sick!!!! What kind of life is that??????
I strongly feel that part of cancer treatment should be to invent a pill that we can take to go to sleep and never wake up.....peacefully. I would do that right now, instead of having to suffering what I know is in store for me. Leave it up to us, make it OUR CHOICE, instead of having a doctor do it. It's our life..and death!!!!!
If they can't find a cure, then for God's sake, find a way to stop our suffering. They put animals out of their misery, it's so inhumane to let human beings suffer in some misguided belief about the "sanctity" of life.
0 -
I am new to this site. And I would appreciate any input. Yesterday, (my wedding anniversary) I was told that I have liver mets. They are on top of my liver. My husband is currently deployed. I am in the Fort Drum area and the closest oncologist is 20 min away. However, that oncologist is a small practice and don't even keep online records. The best place for me to go to is Roswell Park in Buffalo but it is close to 4 hrs away. I just want to know if it's doable. How often are the treatments, how tired will i be, can I make the drive myself? Thank you again
0 -
Liveformybabies,
I am really sorry for your liver mets , specially on your anniversary. I am not from the US but i do know the area and lived in New York longtime ago.
The first thing you have to do is have a biopsy done on your liver mets to make sure it is cancer and if it is the same type as your primary cancer. This is very important before starting any treatment. The second thing is that if it is cancer and confirmed treaments depends on what your oncologist decides to give you , but i can tell you that it will be in the least every 21 days and in some combos it could be weekly. As for driving that far it depends on how the meds will effect you as side effects varies between individuals. But you defintely need to start in a good centre . Stage IV cancer entails constant treatment with maintenance treatment. It is for as long as you live and respond to the treaments.
It would be much better if you are able to be closer to a good hospital. I hope my answers helped. I hope more than the biopsy denies the liver mets and if not do not be afraid there a re a lot of efficient treatments and you will make it. My prayers are with you and your family.
0 -
liveformy babies,
Would it be possible to go to the larger center for diagnosis and treatment decisions, and then go to the local doc for treatments and follow ups? Four hours sounds brutal. I'd probably start with the local onc, see what they say and then go to the big center for a "second opinion." If there is some way that the offices could work together to compliment each other, that seems like the best way to go.
Also, I'm not sure that a biopsy is always necessary. It might depend if the treatment suggested would be changed if they found out it was a different type now. I didn't have one because my on was going to start me on a chemo regardless, as my previous hormonal treatments failed.If this drug doesn't work, I will then have a biopsy. If it does give me stability, we may try another hormonal to see how that goes.
0 -
I haven't posted about the PET results or new tx because, quite frankly, the results were bad and I just couldn't talk about it.
Before the scan, we already knew from bloodwork that Doxil wasn't working (TMs up, liver function way off). I got a phone call from my onc the morning after the scan (and that's NEVER a good sign) asking me to come in for some blood tests so he could make a final decision on my next treatment. When I got there, there was a note on my file saying I should make an appt for new treatment Sunday (this was Thurs, weekend is Israel if Fri-Sat). I got an email that night from onc saying we were trying a new approach, called metronomic therapy. It's smaller doses of a chemo cocktail given at more frequent intervals. So I'm getting 4 chemo drugs (cyclophosphamide, methotrexate, fluorouracil, vincristine) plus steroids once a week. While I was having the first one 2 weeks ago he came in to talk to me. He told me he was worried (and that's something he's NEVER said before). I got the feeling that one of the reasons for trying this approach is that it's easier on my liver to have the smaller doses - and my liver is in bad shape. I decided not to ask more questions because I couldn't handle any more detailed information. It seems this is a good combo for me. The DAY AFTER my first treatment with this I was already starting to feel better. I'd been having a problem with eating - even if I only ate a small amount I would start to feel overwhelmingly over stuffed about 1/2 hour after I finished. By the day after the first treatment that feeling was GONE. I'm also able to eat a bit more, which I need to do. I also have a bit more energy. I had the second treatment last week and continue to feel better (next tx is tomorrow). Onc says my liver functions look better. There is also a place on my liver where I could feel the tumors - it's between my ribs, near my stomach, hence the trouble eating - and I think it's smaller.
Yes, that overstuffed-can't-eat feeling is from mets. Onc was glad to hear eating was a bit better.
The quality-vs-quantity of life is such a personal thing, especially since everyone defines quality of life differently. I spent this last weekend with 2 of my daughters and their families (that's 10 of my 11 grandchildren!). Even though my energy levels are better, I still can't do a lot. But there were hugs and cuddles, and I spent a lot of time watching them play and it was PURE JOY. You have to really think what gives you JOY when you think about this disease.
Deblc, there is another thing to consider. You feel awful now because of the disease. What if you try tx for a while? If it works you could feel better and able to do some things you can't do now. If it doesn't help or gets worse you can stop. You won't know until you try.
Love to all.
Leah
0 -
Leah
It does sound like therapy is killing cancer in your liver. Especially since you can eat a little bit. Your onc really is finding ways to help you.
Pure joy really is our loved ones. That is what keeps me focused. Happy you were able to be with family. Hugs and comfort goes a long way.
Sending you only good thoughts Leah. You've had a good response with new treatment. Hugs.
0
