How are people with liver mets doing?
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Hi Springwatch - what do you mean by quietly optimistic? I have had some concerns as there was a woman posting on Navelbine site who had experienced lack of pain and reduced tumor markers but still with progression. I asked my onc about this and she said it is not a common occurrence but it does happen. I had my 3rd Navelbine infusion yesterday (beginning of 2nd cycle) and other than being very tired (sleepy) this is the easiest chemo I have done so far - I am also feeling little "twinges" in my liver area today - not pain, just a feeling that something is going on. Although I had several tumors on my liver (one 5 1/2 cm) I had not had a lot of pain until about 2 weeks before starting Navelbine - I have been having some intermittent shooting, stabbing (short in duration) pains recently - my onc said it could be the liver but could also be acid stomach problems due to the chemo - so will start some pepcid ac to see if it helps. Anyway, even though my markers are slightly down, my doc says at this point she watches them but does not give them a lot of weight - she will wait for the scan scheduled nine weeks from start of Navelbine.
Such a temptation to analyze every little feeling, pain, change that happens. I am trying not to do that and concentrate on living as fully as I can today. I am getting better on bringing mindfulness training to the moments of my life and being grateful for the blessings I have. Susie
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Tryn2staycalm,
I am sorry for what you have been going through, it is very frustrating to be bloated ant know the reason. I hope your doctor soon gives you the report and deal with you itchings and hives. Wishing you better days to come.
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I found out a few weeks ago that I have liver mets. I have been feeling fine but my MO does 6 month scans due to my history of recurrences. My liver showed up with 2 lesions and I was sent for a biopsy. The results came back that it was breast cancer and was same path as the other 3 times...Triple positive. I will start the chemo concoction of taxotere, herceptin, and perjeta tomorrow. It has been a long couple of weeks getting everything ready to start back with the chemo.
I have been encouraged reading through this thread of all you awesome ladies fighting this battle. I am trying to stay optimistic but as you all know that can be difficult. Just taking it one day at a time for now!
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Recently I learned that mine had spread to the right lobe of my liver. They are moderate sized and highly metabolic. Needless to say I feel discouraged. I am hoping that this chemo will put cancer into retreat.
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Baby and Dune. Hoping your chemo kicks these liver mets in the arse. I completed my second session last week and have my third round in 2 weeks. (Taxotere,Hercetin,Perjeta).
HUgs to you two.
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Best wishes Freygea. I know you are enjoying your break.
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Baby and Dune
I, like you have just started on the liver mets nightmare. This is my first recurrence and after 8 years of putting it all at the back of my mind it just feels like life has been turned completely on its head. I'm having just Abraxane at the moment, every 3 weeks and first treatment is behind me now and the fog just starting to clear. Full of lots of little aches and pains and niggles which you try to interpret but really have no idea what it all means. The worst for me has been swelling and discomfort in liver area which now seems to be resolving slowly with steroids. The worst thing over the last week has been all the long, emotional phone calls to friends and family back home in England as we moved from there to Australia recently. I think dealing with others reactions is often the hardest thing. Here's hoping that we soon adjust to our new lives as all the others lovely lacies on here seem to do so well.
All the best to you. Xxx
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So far I have not been aware of any pain or swelling in the area of my liver. Hopefully the chemo I started as a result of that progression will knock those lesions out. My first cycle is done, except for meeting with my onc. My hair was starting to grow. It's just growing straight up on the top, but not much on the sides. Any time now, the carboplatin should start the hair loss all over again. Oh fun.
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Babyruth,
I am sorry about your progression,mit always sucks to hear such news. However, your new combo is good , i hope it works for you as good as it worked for me . It got me to no evidence of disease, thanks be to God. Good luck to you.
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Dunesleeper,
I am sorry you have to go through yet another treatment and hope this one kick you liver mets. Carboplatin makes you loose hair , true but not all of it you will keep some. But it is very hard on the blood, white blood cells and red blood cells as well as platelets specially combined with Gemzar. If you feel extremely tired or bruise easily or feel faint inform your onc immediately. I had one blood transfusion during this combo, weekly neupogen , anemia and had to cancel twice because of low platelets and RBC . All the best.
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Isy,
Good luck to you on Abraxane with very few side effects. It is true it is hard to tell family and friends but right now you cannot worry about them you have to focus on yourself and well being. Concentrate on becominf well again.
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Freygea-How have you been doing on your chemo? Any problems or issues that you can forewarn me about?
Woodylb-So happy that you are NED. I hope I get the same results as you did!
Dunesleeper-I have not had any pain or swelling in my liver either. I hope it stays that way.
Isy-Sorry that you are having pain and swelling. I hope you can get some relief soon. I think telling friends and family is one of the most stressful parts of cancer.
Today is my first day back in the chair. I am hoping for an easy day with no issues. Thanks for all the support ladies.
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Baby, my first round I did fine until day six . I broke out in a rash on my hands. It looked like poison ivy but I had used latex gloves and to this day, I think the latex played a part in my hand rash. The doc prescribed me additional steroids for 2 days pre and 2 days post chemo and this round I still developed a rash but now it is more red and looking live hives. I wash my hands toooooooooooo muuuuuuuuuuuuch (retired R.N. bleh).
Fatigue was not that bad the first round (lasted about 3 days). This second round I still feel achey and tired and is day 8.
Now that I said all that- it still is not that bad. I went out and had dinner with hubby on Sunday. I am not sleeping all day long and am actually doing things to keep busy (so i do not cut my hands off..lol).
I am only telling you all of this so that you know to call your doc and ask for something if you note any sort of rash anywhere. (Do not wait like silly me).
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BabyRuth, I hope you had a good treatment and a good day.
Isy, now is the time, if ever there is a time, to put yourself first. Whatever it takes to get you well, and that includes reduced stress, is what you have to do.
Woody! Huge congratulations on becoming NED. I would love to see that on my own reports, but I will settle for seeing it has happened for you and other ladies here. It can be done. That's a great realization. Also, I have had to start neulasta. It really did knock down my neutrophils. I'm taking some supplements, hoping to keep the number high enough that I can get treatment. I was 1.2. It should have been 1.5. The doctor wanted to do the treatment anyway (thank God) and then had me come in the next day for the neulasta. Whatever it takes!
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I hear you dune sleeper! I'm tired of people bursting into tears on me whilst I'm the one holding it together. Mind you, eldest son is off school today with tummy grumbles and I'm enjoying being here for him, making him cups of tea and just made a lovely batch of soup fur us both. Energy levels coming back after last treatment though starting to feel slight tingling/numbness in the tips of fingers while typing this. Worried as I thought this happened a lot further down the track. Anyone else experienced this? One of the leaflets I have says this could be a sign of nerve damage, another says it should resolve within a week or so.
Woody, how long did it take you to get to NED and how extensive were your mets? Let's hope we all follow you down that path soon!
Xx
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Isy,
Feeling tingles at the tip of your fingers or toes is normal with your treatment , it causes neuropathy. Usually it is mild it comes and go. If it becomes too much inform your doctor. Walking helps and moving around.
To answer your questions, my mets were pretty extensive i have liver mets in both lobesaround ten of them at first with one about 2.5 cm then i progressed both in the liver and the skeleton . I had mets from the middle of my spine all the way down to my right hip and the tip of my femur. However my situation differs, i had 6 months of carboplatin +gemzar which shrunk my tumors by 20% and stable. I took aromasin during the summer which led me to progression to bones and liver. I took xeloda during this time it didn't work for me as it gave mixed response . My doctor started to talk to me about palliative care. But something great happened after two negative FISH for HER2+ i got the results of my genetic testing as you know i got positive results. So i started another treament for her2+ plus taxol.
With this combo after three months my PET showed clear both in the liver and bones as well as the second PET after three month. Now i am due for scanning in August and hope my stauts did not change.
Usually onc do not scan before three cycles unless there is a need. I hope your treatment will show the same results after three months. But remember also with stage IV stable is good. The most important thing is to containthe disease so it won't spread somewhere else.
I am glad you are enjoying your time with your son and wish you few side effects and a great response. Be patient loll.
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My goodness Woody you have been through some really scary times but what an amazing outcome!! So pleased for you and long may it continue. before I had the HER2 test my MO said "I would love for you to be positive" as that very week they had authorised a new treatment in Australia for HER2+ and it had proved very successful, sadly for me it wasn't the case.
He did actually call me this evening to see how I was going one week post treatment. impressed with that service (didn't get that in England!). He sounded even tierder than I was too. Discussed the tingling fingers with him and he said exactly as you said, and that hopefully it would resolve over the next few days. It's freezing here too which doesn't help numb fingers and toes!
Enjoy your weekend everyon
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Pathology back- tumor in my liver was cancerous. the type of tumor was different than before. It was determined to be ER-, PR+, Her2+. I have never been PR+ before. My oncologist wasn't exactly sure if it was because of the change in testing facility or not. In the end, it was decided to keep me on the xeloda (to treat my other tumor type) and to change my targeted therapy back to Herceptin infusions. Good news is that I am not giong to go on prejeta at this time. We can add that if we need later. so overall a pretty good news I guess. My big worry now is that my heart holds out. Prevously I ran into problems with the Herceptin and it had to be stopped before the year. Hoping that with my heart meds, a few years recovery and being in better health that I can avoid those problems.
also because I have had a day to digest and am working very hard on reframing I am looking at myself as NED again since the rest of the scans were good and they just cut the only tumor out, I am visualizing NED. I am thnking the change in medication is to keep me there not to get me there. Reframing.
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Isy,
I am so happy you have a caring oncologist, this is very important. Also keep your feet warm as much as you can to lessen neuropathy symptoms.
Thank you for your wishes , i hope and wish the same results for you and all the ladies on this board.
Enjoy your weekend
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Leftfoot,
I am sorry about the resection results , but happy there is a solution and treatment. Is the tumors related to breadt cancer or it is a totally different cancer?
How are you recovering from surgery? I hope you recover well and are able to restart on herceptin.
Wishing and praying for a speedy recovery and a complete response to treatment and surgery with NED peaking and entering your doorstep.
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Woodylb- It is unfortunately my breast cancer that has mutated some. so it is considered a recurrance. that said, I am glad that I have options, that it was the only thing they found when I was scanned head to toe last and that I have many treatment options.
I am still sore but not taking pain meds. I am up and around doing mommy things and was able to see my son play soccer tonight. Miletone for him as he hasn't played in 9 months due to a back fracture. At one point we scored and I cheered. I am not regreting tha but so totally worth it. I am sure I will be fine in a bit. I am looking to find house help since I can't lift anything for a bit. but other than that everything is ok.
thanks for asking
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NED it is leftfootforward! And that's a wonderful thing. May you stay there a long, long time.
I think I just caught a cold, and it is my first since starting chemo. Does anyone know how that can affect chemo treatment. Fortunately, this week (Monday) is my week off. I just go to the onc that day. However, colds linger. I'm taking lots of vitamin C. Well, anyway, just wondering if anyone has any experience to share with me.
Be well, feel well, do well.
Charlene
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dunesleeper- they probably check your blood counts before therapy. If its just a cold you are probably fine. Most likely you will have to wear a mask or will be placed in an isolation room so that you don't infect any of the other patients there receiving treatment. I had several colds and this is what they did with me. Thats my best guess anyway
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I wonder if anyone can help. I have just finished 8 weeks of taxol...ie 8 infusions. The scan after that showed shrinkage which was good.... It is in my liver..extensive.... But one week later all my liver function blood markers have risen. I am worried taxol has stopped working after 8 weeks. Has similar happened to anyone ie liver tests rising but cancer still shrinking whilst on taxol? Please help x
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Torridon, specifically, which liver tests have risen? I have heard the AST/ALT can go up when the body is breaking down the cancer. I don't think that applies to bilirubin, alkaline phosphotase though.
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all have risen apart from bilirubin..... Alt, alp, ggt and the non specific tumor marker LDh. Surely I can get more than 8 weeks out if taxol?
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G'day sisters, I've been meaning to post to this thread for a while but I mostly use my tablet these days and it won't let me register on BCO, no matter what I do.
I celebrated 20 yrs of BC in May and was dxed with bone mets 6.5yrs ago,am currently dealing with liver mets for nearly two years. I have done Abraxane, Xeloda, Tamoxifen and just three months of CMF this year. I started the CMF after having a right hip replacement in February, the arthritis in my hips was apparently caused by 4yrs of AI's. I did three months of infusions before stopping to have my left hip done five weeks ago. I was told that I would start CMF again a month after the hip was done as I wouldn't have much immunity to infection with the meds in my system.
So....I had a whole body scan and one of my liver before my appointment with the Onc last week thinking that I would probably be continuing the CMF regime this week. Well, was I in for a surprise. I didn't get my usual Onc whom I thought was some type of student/intern because he would scurry out of the consultation room whenever he didn't have an answer....he was also from another country as it was quite hard to understand what he was saying at times. This Dr last week was an Aussie who had been brought from Victoria, two states away for three weeks as a fill-in because our state seems to have a shortage of Oncs. I didn't have a problem with understanding him at all.
One of the first things he told me was that I only had Navelbine left in my arsenal against this disease and it's not very good at what it should do. I asked about a new tx that started with 'K' and he said that the first patient he tried with it, died on him, so he hasn't used it since.
I then told him that I had scans done before this visit because he was shuffling about in my file like he hadn't seen it before, which he probably hadn't. Not that there was much in it as the hospital lost my whole 6.5yrs-since-mets-dx-file three months ago and it hasn't been seen since. I'd say it only held information about my last two CMF treatments and the prescriptions for them. Thankfully, the pharmacy had that info on their computers so I didn't have to go home without any tx at all that day.
I was a bit worried about the scan results this time as I hadn't had the full CMF regime and it had been slightly stop/start to say the least. I had no real symptoms as such other than a sharp twinge under my left rib occasionally, which I told him about after he asked me how I felt generally speaking. His answer was that he doesn't go by scans and tests so much, he much prefers to see how the patient is feeling physically. He probably wouldn't have even opened the computer file from the Radiologists diagnostic report if I hadn't asked him what it said. He said that there was a bit of progression but nothing to worry about.
Anyway, I have to go back again in a month for another Onc app't which I sincerely hope is nothing like that one. I left there with the distinct impression that this dr was filling in time until he retires or he is burnt out and took for himself a paid holiday in our sunny state at the expense of all the ladies who trust people like him with their lives.
I am going to see my GP this week to ask her if she can print out copies of the scan reports for me so that I can actually read them myself after she verbally translates them for me into patient language.
This whole episode leads me to believe that as I am seen as incurable by the medical system, they aren't too interested in treating me anymore....that as long as they treat me with something or other, they will be seen by me as trying to 'cure' me.
Not good enough, I say and I will be questioning whomever I see next time.
Sorry about this post but I needed to get it off my chest so to speak.
Sheila.
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so sorry sheila. Talking with your general doctor to get a better picture sounds like a great idea. Ihope she/he makes you feel more listened to and better.,
Hugs to you., come here anytime you need support
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Hi again ladies,
I am doing a bit better now with less complications. I see I have missed lots and sorry to see that some have progressed. I see how supportive you all still are I still think you are a wonderful bunch of ladies. I too had to get held back due to low counts. Can hardly wait for next scans. Thinking positive. Improvement noted with lungs first now some with bone pain and praying for the liver next.
Cathy
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hi everyone.
Trying tocatch up as been on a fork road b/c of 4cm lesion in dura. Had a brain MRI in July to see if changes from May to july. No change and they think b9 mennigoma. Last week spinal tsp and headache continues. 😖😖😖 should find out tomorrow if I can put head lesion to bed. And lock the door. 👀👀
Ask your onc about Lxempra for chemo. I believe used when taxenes fail. There are three of us on it and there is a thread. This is my 2 nd chemo as taxol worked for 10 months then liver lesion 2.5 cm. and TMs elevated.
I am currently getting # 4 lxempratoday. My onc preferred to use this rather then then Gemzar or navebine and keep those and other chemos for later. My Tx has been Femara , taxol 1 every week for 3 and one week off. And know Lxempra. It seems not a lot of peeps on here have gotten Lxempra. Will have scan in a few months. All blood work is good right now.
Google and look at studies. It doesn't affect kidney function badly but can raise liver function tests and alkaline phosphate. I feel good about this chemo. 1x@3 weeks. The third week I feel pretty good. The weekly taxol kickef my butt.
Time to get unhooked. 👍👍
Oh you get neulasta shot dsy after infusion of Lxempra. Protocol.
Best to all
Diana
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