How are people with liver mets doing?
Comments
-
I haven't posted on this thread for a month. I have tried to keep up to date with how everyone is doing. I want to say hello to our newcomers and say that I am sorry they have found themselves here.
I haven't posted for some time as all hell has been let loose here.
I had a focal seizure about two weeks ago and was admitted to hospital for 24 hrs. The seizure didn't last long, about 30 seconds. I was admitted to the stroke unit and had a brain CT followed by an MRI. The brain MRI did not find anything in my brain but the dr. there told me the cancer was in my meninges so I thought I had LM mets. I was discharged back to my onc. for follow up. He works at a different hospital and when he requested my scans from the first hospital they wouldn't let him have them unless I went down there in person and paid $50. Rather than messing around any more my onc ordered another brain MRI which I had done yesterday. I haven't had the full results but i did get a phone call from my onc to say that the MRI they did showed irritation to the meninges under a previously treated skull met but more seriously a narrowed, partially thrombosed large vein on top of my brain. How the first hospital missed this I will never know. I think they just automatically assumed because I have stage iv cancer they didn't have to look any further for a cause. My onc was furious and has arranged an appt. with a neurologist to try and get this treated. It is not cancer related. The first hospital gave me phenytoin, an anti-seizure medication which has a side effect of causing bone thinning. Just what I need with a family history osteoporosis and bony mets. I am hoping to get it changed when I see the neurologist.
I also had a whole body MRI last week to see if my chemo is working. My bone mets are stable, My lung mets are insignificant but my liver mets have come roaring back after showing regression on the previous two scans. My onc is arranging a liver biopsy to see if my mets have changed status.
Oh - I almost forgot my magnesium levels were so low on my last blood tests that I am now on supplements. One thing after another.
Woody, you mention ky genomic testing. What is that? I googled and didn't get very much on it. Why did your doctor decide to do this test as well as the FISH test?
0 -
Spring,
Welcome back, you were missed:). I am very happy the seizure was not cased by cancer and that it can be treated by a neurologist. I hope you feel better soon and this incident does not happen ever again. Good news about your mets being stable and very sorry you are progressing again. Your onc is right to request another biopsy to check the status.
I requested the genetic testing not my onc, i informed him i wanted to do it . I had read about it and seen it here , so when my cancer reoccurred it showed + 2 on the HER2+ front which was equivocal. The FISH came back. Negative.
Later i decided to perform the test through the American hospital in my country and was told they will send it to Germany but they will have to perform anpther histological test again before sending it and they did , it showed +3 for HER2 they did another FISH it also came back negative. I was really losing hope when the results came back ( three weeks later) with a CISH and genetic testing results. Which stated extreme positivity to HER2+ and that they must start me on anti Her2 meds.
The test performed by the research lab was called genomic testing. My MO called it intelligent genomic testing. It also showed all the genes and what chemo and treatmebts are likely to work for me backed up with scientific research and their level of credibility.
Thanks be to God i got full response on the regimen. The test is not standard and is not covered by the insurance and the cost was 6500$. But it was worth every penny , it bought me more time. The headquarters of the Lab is in Arizona. If you like i could forwatd it to you.
I hope you will get a new break with the biopsy. My prayers are with you . Let me know if you need more info. Hugs.
0 -
Hi woody,
Thank you for your reply. Please could I have the information on the lab in Arizona. Was it the CISH test that proved positive for HER2 or did it show up on the genomic profile, too. I am more than willing to pay for it. I had a bone biopsy done 15 months ago which showed I was now TN but for all sorts of reason I am not confident about this result. Even less so today as the biopsy was sent to the same hospital where I was admitted 2 weeks ago which failed to interpret my MRI correctly.
Until I see the neurologist I cannot say for sure that it is the thrombosed vein which caused the seizure. It could be the irritated meninges. But the vein is the biggest issue at the moment because it could block completely and cause a major problem so we need to deal with that first. The brain MRI suggested that the skull met over the irritated meninges may be active again but we are not going to treat until I have seen the neurologist.
It is so lovely to read that having got your Her 2 status sorted out that you are now NED. Long may it continue.
Spring
0 -
Spring...so glad you've let us know what you're going through & my prayers for the best possible news and smart drs who know how to treat this.
Modum...my thoughts are with you as you/we mourn the loss of your friend.
Leftfoot...sad that UW didn't offer better care...I've had a few minor blips, but overall great care. Thinking of you.
Spicey...at a young 30....you should not be dealing with this horrid stuff....no one should...but it makes me that much more angry.
I'm praying for all...sending love & hope & off to bed. I got to celebrate my 3rd bonus bday on 7/2...that's what I'm calling that day now, since they thought I wouldn't see my 7/2/2013 bday. Very thankful.
0 -
Hi RonnieKay,
Happy Birthday for the 2nd. I hope you had a lovely third bonus birthday. Did you do anything special?
I just heard from the hospital and my liver biopsy is on the 15th. I don't know how this will interfere with the treatment for my blood clot. I haven't heard from the neurologist yet.
Spring
0 -
Ronnie- I am sure I will have great care. they were great with my BMX and I am sure I will breeze through this procedure as well. I have found that they don't explain things as well as other institutions around here. My husband explained to me it is because the other hospitals have to deal with things that have to do with customer satisfaction much more than the U. I know the U is where I need to be and have all the faith in the world in them. I just hope I don' t have to spend much time there. Would rather be at home. I will keep you updated.Hope you have a wonderful birthday. the weather around here is just amazing. My dog however thinks it is too hot. I am looking forward to the cooler weather this week (80s) not 90s.
Springwatch- I hope you get your answers soon.
I was able to attend the womens world cup yesterday. What a wonderful experience. Happy that my littles now have a new generation to look up to. this was my first final. I had been to a semi fianl and round robin games in 2003 and 1999. But yesterday takes the cake. I am a soccer fanatic
take care everyone.
0 -
Hey everybody, how quickly can liver mets grow? I was NED at my last scan mid May. Past four weeks I have been experiencing a growing problem when I try to eat - no acid reflux but a huge blocked feeling at the top of my stomach, eventually it goes away and I can eat but I feel full quickly and the whole feeling is super unpleasant. I rang my onc today, who immediately said he wanted to look into it and had ordered a CT scan for Friday. If its good news, i.e. no cancer to be seen on scan, then he is going to treat me to an endoscopy (by way of a reward ha ha ) to see what is going on. Cant't say I like the idea of an endoscopy very much, but I know I would rather have a shy little hiatus hernia than another liver met pressing on the stomach valve area. If it's not one thing, it's another. Anyone had anything similar? Stupid cancer. Boo.
0 -
I had a similar problem. It was actually caused by reflux due to my Medd. I was prescribed a acid reducer and all was better. This was after an endoscopy. I hope the same holds true for you.
0 -
Thanks Left, that is encouraging. I feel like I have been pumped up by a bicycle pump. If it takes an endoscopy to diagnose this, then so be it. I was only cleared of liver mets last August, and am so hoping to last a little longer at least without more treatment. Thanks for your help. Boo.
0 -
Boo,
In my own experience liver mets can grow back quickly. Pain from liver mets is usually associated with upper right abdominal quadrant pain. What you are describing doesn't sound like this but you are right to get it checked out. It could be any number of things and only medical investigation will give you a definitive answer. I hope you get some answers on Friday when you have your CT scan.
spring
0 -
leftfootforward - It is thrilling to hear that you were at the world cup finals. What a fantastic game. Those young women played their hearts out. They certainly are great role models and I hope your young ones will get inspiration from them.
Boo123 - This is my first round with liver mets so I don't have any idea how long they were growing before diagnosis. I do know that I had many gastrointestinal problem for at least 5 months which finally sent me to the doctor. I changed medication for my arthritis and was sent for a gall bladder ultrasound. Oddly, before I got to the ultrasound, I developed severe right lower quadrant pain which sent me to the ER and got the ultrasound right away. That's when the proverbial poop hit the fan and I found out it was the liver mets all along.
I've had one recurrence with the severe pain but my major problems have been all sorts of gastro symptoms including what you described. Sometimes I eat well and other times I don't eat at all. Reflux comes and goes and it doesn't seem to matter what I have eaten or not eaten. Fortunately, Pepcid Complete works well for me most of the time. I certainly hope your scans come out well and your doctors find a simple solution.
0 -
Thanks both to Spring and Sarah. This is such a complicated disease, so hearing your thoughts and experiences is helpful - hopefully this will all be something I can put behind me. Got appointment time sorted now, so am keeping myself distracted until Friday. Thanks everyone for your help. These boards are a wonder. Boo
0 -
That's a good question, Spring. Do they have you on any tx for the clot at this time??? I'm glad you've got the biopsy appt but I'm sure you will you see the onc before then, right? Just praying the clot subsides...disappears on its own. It just seems like you're due a major break!!!
Leftfoot...it must've been thrilling to be at the soccer match!!! They were on fire. Such athleticism & talent & teamwork. And really, Hope never ceases to amaze me :-). I was thinking you'd decided against UW. Advocate....you know the ropes!
Boo...my mets exploded over a 6 month period...no symptoms except a bit of fatigue & oddly, high bp. Hope you find a different, easy to destroy, culprit to the full feeling!
Thinking of all..,praying for healing.
0 -
Last scan on Xeloda showed signifigant progression of liver mets - have just completed 1st cycle of Navelbine - 2 weeks on and 1 week off - due to start 2nd cycle Monday -I got my blood work today and my tumor markers are down - also, I was having pain in liver area and weird digestive disturbances which stopped after 1st infusion. I was reluctant to try another chemo as no chemo has worked for me yet - diagnosed 3B in March 2012 - dense dose chemo for 6 months and still progression to stage IV - dare I hope this might be working? Chemo has always hit me hard and Xeloda was very difficult for me - Navelbine is a walk in the park compared - only sleepy and tired the day after infusion. My doc is going to do another scan (contrast CT) after 3rd cycle - I have been one who has received consistent "bad" news (many bone mets to start, then liver) so I have some trouble mustering up an hopeful attitude. I would love it if this buys me some time.
0 -
Apackoftwo,
I am glad you seem to be responding well to Nevalbine with your TMs down. Most of the ladies here who did Nevalbine responded well . Hopefully it will be your case. Even though yu did not respond well to other chemos , this does not mean you won't response to this one. Sometimes it is just not the right med for you. I hope nevalbine is and that you would soon have good results. There is always hope. Keep us posted . Prayers.
0 -
Apackoftwo- I am hopeful that tumor markers going Down means good things for you. I have good thoughts that navelbine will work for you.
I apologize for typos as I am home now and trying to recover from my resection. From what I understand I didn't wake up very well and they almost put me in bipap but I got there in my own. They were able to respect the tumor and only took about 20%of my liver out. No surprises so that's good. Now I am honeteyongbto not take narcotics and am on anti coagulants shots. In a bit more pain than I thought but holding my own. Hoping to be over the hump soon.
Ronnie- u of W got the job done but made a few mistakes. Not that great with the details. They have a new pre op procedure that they implemented right before I was wheeled off to OR. Almost kept me from having surgery. They also didn't seem to know about my chemo status and when I should resume. Had a back n forth about that one. OT and PT were great and so was most of the nursing staff. So overall very pleasedwith rests. Follow up in two weeks.
Take care everyone
0 -
Leftfoot,
I am happy your operation went smoothly without complications or surprises. I wish you a speedy recovery and successful results. Praying for your peace of mind and a touch of healing.
0 -
I have nothing to report but know I am thinking bout you all. Still dealing with brain lesion that appear to be b9 but spinal tap Wednesday. I think chemo Lxempra is working as liver function tests in nomal. Scan in few months. Don't give up. Options. Always think options ️hugs
0 -
Woody - thank you for support - left foot - I think you are soooooo brave - you all maintain such a positive attitude and the love and support you offer is amazing - I don't often post but read almost everyday and it helps me keep things in perspective. Susie
0 -
Hi everyone,
I've been around several forums for a couple of weeks now, have found this one to be the most informative, supportive and easiest to navigate! I'm in Australia, we moved here about 18 months ago from the UK, which only adds to the fear and loneliness I'm feeling right now. Was originally diagnosed in 2007, had lumpectomy and went through the standard chemo and radio regime quite easily helped by massive support from friends and family. Did five years of tamoxifen and got on with life with a vengeance, changed careers, travelled loads and brought up my two boys with my husband, I really thought the big C was all behind me.
Coming here to start a new life was challenging but something we'd always wanted to do. Hubby is Australian so it's home for him and the boys were keen to experience life here too, the first 18 months were great and we just bought a beautiful house by the beach. Then about three weeks ago everything came crashing down. A trip to the GP with a dicky tummy led to a scan as he thought my liver felt a bit swollen, to being told I had 'multiple' mets in my liver. All other areas clear. To top it all they now class me as triple negative although the onc is not sure about that has I do have a 3% ER positive, he says it's a bit of a grey area which is not very helpful. Have just started on nab-paclitaxel chemo every 3 weeks (Abraxane) to hopefully shrink them, at the moment the whole area is quite hard and swollen. I can't believe how quickly this has all happened and how ill I suddenly feel. Friends and family back home are all devestated and its so hard being so far away. have had to turn down a job offer and the financial situation is looking dire. On top of that its cold and rainy and things just couldn't be any more depressing!!
Hoping to hook up with some fellow fighters for support and friendship.
Isy
0 -
Welcome, Isy. I'm so sorry about your recurrence. It's so devastating to think you are fine and then find out it's in your liver. I know I could hardly stop crying when I got my news. I think you will feel better once you see that chemo is doing its job. I had Taxol (similar to Abraxane), and it worked so well for my liver. These days I am enjoying my life and family, and I think you will, too. It's good news that other areas are clear. There is hope!
0 -
Isy,
I am sorry you find yourself here again after a long period of cancer free. It is devastating and frightening but stage IV is not always the end. Like Shetland said it is good it is only in one area and there are many treatments out there even for triple negative. It is hard being faraway from family and friends and home, but you have your husband and boys who will give you the support you need as well as us here. You will find great ladies here and a lot of support and information from people with similar situation.
You mentionned a scan which discovered the liver mets but you did not mention if a biopsy was performed on those liver mets. If they did not do a biopsy before starting your chemo, then i advise you to get one and request one as soon as possible. Cancer can mutate and change status allowing you better treatments and more options.
It is very important to do the biopsy before anything. Stage IV cancer is not an easy ride, it is bumpy because you never know what comes next but it is doable. After you get over the shock things become kind of a rountine. The most important things is to have hope and emotional strength and faith. Do not let it destroy you. Eaiser said than done but i am sure you will get there. Feel free to come here and vent anytime you like , you will always find good ears and warm welcome. I hope you have good doctors and good treatments so you can resume your life. God bless you.0 -
thank you for your kind and positive words ladies. I really admire your positive outlook and hope I can get some of that soon! Yes I did have a biopsy Woody which is when they found out that my previously ER+ status had morphed to triple negative. Although apparently it is at 3% - some practitioners class that as weakly positive for others it needs to be at <10%. I've already been discounted for a triple neg trial becaus of this. Last time I saw onc he was talking about maybe combining some hormone therapy in the treatment - in the next sentence he was saying that hormone treatments would not work for me. I feel a second opinion coming at some stage soon.. HER2 is definitely neg. as you say you never know what comes next and I'm finding the uncertainty so hard.
All the best to everyone
0 -
Isy i am glad everything was done properly , i agree though with your doctors 3% ER+ is not too much it is too weak , it will not effect the cancer. However, a second opinion is always welcome and you go with what feels right for you. Being triple negative sometimes has its benefits. It responds very well to chemo , it has been 8 years since your last diagnosis , this is also in your favor, and my onc told me IDC triple neg may more than other go on remission. So why not believe you may be one of those. I have a friend who is triple negative her first diagnosis was 24 years ago and she was advanced and had only chemo and radiation. She was 33 at the time and the cancer was very agressive. It never came back. So i hope all works in your favor.
Abraxane is a good chemo and it may shrink your tumors or even make them disappear. As for not knowing what comes next and living always in fear , it is hard , i know but somehow eventually it gets easier even with the ups and downs. There are some ladies who have been living with satge IV for years. Treatments may never stops bit it becomes part of your life and if you look at it from a positive angle , that we are luckier than the ladies who had the same diagnosis years ago and who did not have the options we have now, well you feel blessed. I know there are no positive sides to cancer but people get sick and die from dofferent reasons , there are no guaranties even when we are healthy that we won't die from something else. I know you know all this but fear is crippling and it makes our thoughts fuzzy.
You may beat this again and survive for many years to come and i wish you this from the bottom of my heart. I take it one day at a time , i live as normal as i can and do my chores , while i am alive and healthy , i want to enjoy what i have without letting the stupid cancer make me forget that i am alive dispite it.
0 -
Woody you are such a tonic - your kind words made me feel better than the endone tablet I had earlier on. (My painkiller of choice and seems to take the edge off the bad thoughts). They should bottle what you are giving out and sell to everyone going for treatment! At the moment for me it is just a waiting game and trying to adjust to this new way of life. Thank you so much for your heartfelt response to a complete stranger on the other side of the world
0 -
Isy, you are welcome anytime. The fact that you reached out in here you are no longer a stranger. Plus i love helping out , if i can make a difference , it makes me happy, it is gratifying
). The pain will go away when you start chemo and you will feel better, even though you will have to deal with with side effects but it is all worth it if it kicks the cancer out . Feeel free to post anytime, and if you need anything you can private message me. Keep me posted.0 -
packoftwo,
I would be quietly optimistic about the navelbine working. I had liver pain after starting my gem/carbo therapy and my onc said they used to get very excited when this happened as it was often an indicator that the chemo was working.
leftfoot, I hope your recovery from your resection goes smoothly.
Diana, I hope all goes well with your spinal tap on Wednesday.
Isy, Your oncologist is correct that treating with anti-hormonals is a bit of a grey area. This article may be helpful but may also raise even more questions. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC385136...
If you send a PM to bestbird who contributes to this forum, she has prepared a very useful summary on treatment for metastatic breast cancer. This link will give you the instructions on how to get it. https://community.breastcancer.org/forum/8/topic/8...
I was ER+ and converted to TN when I had a bone biopsy following my recurrence 16 months ago. I have a liver biopsy scheduled for Wednesday to see if the status has changed again. Not optimistic but I told my onc we have got to the "leave no stone unturned stage".
Ronnie, I still have not seen the neurologist. Phoned my onc's office on Friday to find out what is going on.
0 -
Hi Ladies,
I was just trying to catch up with everyone. Have been rather under the weather. I was not doing so well with the bowel movement issues and after getting my blood work they pulled me from having chemo as my neutrophils were too low. Then I had a severe skin reaction (very itchy then hives) to both arms and hands and chest area, and I hesitated to go to hospital. However I went to one 25 minutes away. I had a severe itchy redness then it turned to hives. I am starting to feel like does all the bad stuff have to happen to me???!!!!!! They gave me a shot of Benedryl in the hip only after blood work, xrays to pelvis, told me to take this stuff (purg-odan) to make my bowels move. It is the stuff that warms up in water and is not that bad. As it had been 8 days since I had a bowel movement and only like 3 in a month. I was so bloated and uncomfortable. I am not sure what my MO will due about the hives. He will get the report today. So far I am moving bowels, and I have to take Benedryl every 4 hours. Need to rest now .. hope you all are doing great.
Cathy
0 -
springwatch, thanks for the links, really useful, the more info we can get the more empowered we feel to take some ownership of what's happening to us. The area of being weakly positive to hormones is quite a contentious area with quite different schools of thought on the cut off points. Was really interested to see in bestbird's amazing resource that even letting a sample sit around for too long in the lab can affect results. Onc is quite open to further biopsy down the track.
Scalp is starting to itch - I know what that means, off to buy myself a stunning wig.
Love to all
0 -
Spring,
Wishing you good luck on tomorrow's biopsy , i hope you get results you need to get an effective treatment. Praying you soon hear good news and hear from your neurologist. Keep us posted.
0
