How are people with liver mets doing?
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Good morning ladies! Looking for loving words of encouragement as I find myself drowning in all of this. Earlier this month I went from what I thought was perfect health to several weeks in hospital as BC Mets tumor was found on pancreas and was blocking biliary duct, and needed several procedures and many, many tests to determine where my cancer had spread.
In the end, I have tumor on pancreas and enlarged abdominal lymph node, 7 small brain lesions, liver mets but not measurable lesions-- more like my entire left lobe, and a couple spots on spine and hip. Lungs and spinal fluid clear.
I immediately began whole brain radiation (WBR) last Wednesday as well as a rad treatment to tumor on pancreas. I will have 10 sessions total-- today is #4. It is my understanding that after rads I will begin xeloda to try and reverse some of the systemic mets.
My challenge is that my stomach is a mess....completely hard distended like I am 7 months pregnant. If I eat, the pressure in my stomach is worse but I want to ensure nutrition. I had a constipation issue due to surgeries and narcotics, but a bottle of magnesium citrate cleaned me out but didn't offer me much relief with regards to "space". I am wondering if this is the normal process with regards to liver/abdominal mets-- extreme distention and discomfort--- until I begin systemic treatment to hopefully reduce. Any advice, management tips, empathy would so be appreciated, as I am sure you all can relate to how scary all this is. Thank you sooo much!😘😘
And a quick chime in on my liver BX procedure.... mine was UTS guided and I was in a happy drug haze. The doc said they did not see a specific place to biopsy as UTS was not showing any lesions (neither did CT, but PET showed uptake). There was a pathologist in the room, that was immediately checking for malignancy on BX sample. Doc said if not malignant I was going to be brought into a different room for a CT guided biopsy of the lymph node in my abdomen. That never happened, so I knew liver BX showed malignancy. Like Grann, they wanted to get a good sample to send to Foundation One....as my tumor markers also seemed to change from high ER to low.
Thank you all again for your help-- especially at Christmas! 🙏🏻
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Mamafelice, the distention sounds like it's probably ascites, fluid on the abdomen, which is common with liver Mets. I don't know what the criteria is for draining but I would ask about it. I had them recently, not as bad as yours (less pregnant). I went on abraxane and they are almost resolved if not altogether resolved. My oncologist said I didn't have a lot but I went up a size in pants and it was very noticeable and alarming to me. I can imagine it's hard to wait until rads are done to get the systemic treatment started. Hopefully someone with more knowledge will come along soon. I hope you can some relief! And enjoy the holidays.
Heidi
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Grannax:I had Ultrasound liver bx. My tumors showed up very well with the ultrasound. You can see the tumors on the screen while the procedure is underway if you want.
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lisajo: how elevated are your enzymes? My enzymes were normal when I started carbo gem and them elevated for 3-4 months on treatment. They are back to normal and I am still on carbo gem. Also, I had no pain at the beginning when I had diffuse liver cancer. After starting on carbo gem I had increase pain and discomfort. I believe it is the liver injury from the carbo gem since I have very little liver cancer now.
There are several drugs you might be able to try: PARP, IMMUN 132, xeloda, etc
Have you had genomic testing yet to look for targeted therapies? Caris and Foundation One are the most popular.
Hugs and prayers. Let us know about your scan results on Friday.
Tricia
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MamaFelice, I'm sorry things are so scary and difficult for you. I'm sending you Christmas hugs and prayers that it will be as good a Christmas as possible for you and you will get the help you need.
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I hope everyone is well. I am starting Halaven on Friday. I have been waiting to get into a clinical trial and learned that although the pathologist was told to expedite my biopsy performed 12/14 to F1 for genomic testing, she sat on it for a week before sending it in and only sent it 2 days ago. Same pathologist who lost/used up my last biopsy preventing me from having genetic testing in 2017. I have now been off treatment for 2 weeks (I had last Doxil 6 weeks ago and it is administered every 4 weeks). Best case scenario, I would be ready to start trial in 3-4 weeks plus waiting for the medication to arrive after that. Add holidays and the lazy, incompetent people in pathology and the “research" department at my cancer center in charge of processing my application and ensuring it is expedited who do not care about saving lives and view everyone like a number that has already expired and I am sure it would end up taking longer. Very disappointing. 😥
Hope everyone is enjoying the holidays despite all we are going through!!
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MamaFelice. I have been active on bco for 2 years and what I have read throughout all threads and topics, that even when your body is at its worse, treatments can turn this around.
It sounds like your medical team is addressing the most urgent areas with radiation. Then tackling the rest with chemo.
I am hoping others will chime in that have had your similar situation to ease your mind. Please remember you are still here and will get thru this period.
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JFL, I remember reading recently about the first screw-up. This takes the cake. I would complain! I never like to complain because I don't want to be subconsciously treated less important, but when I had finally had it with stuff like that I did. Things moved along very quickly after that. Pisses me off for you.
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I wish I could respond to each. Of you by name but I'm just too tired tonight. I will be thinking of each of your unique situations. Hoping s to much we can all get what we really need. Circumstances are incredibly difficult to think through at this time of year.
I have my third Christmas and my birthday with my family tomorrow. Then Thursday is my liver BX. Merry Christmas to all.
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Mamafelice - I am sorry to hear about what you are going through but it sounds like you have started a good treatment plan. I do not have experience with ascites but maybe there are a few things you could try at home before you get help from a doctor. Zarkova wrote several posts earlier in the year about stretching her back over a bolster after a meal to help digest and ease the discomfort of her abdomen. You could search her posts or maybe someone will remember more about it.
Grannax - My liver bx was attempted with an ultrasound the first time. I had one 9mm liver met. We could see it on the screen when I held my breath but then it disappeared. The doctor did not feel comfortable doing a biopsy with a tumor under 1cm, so I went home. It was worth the try though. A few weeks later I found an IR who ablated my 9mm met. He was able to biopsy the met before he removed it. I bet your bx will be a success.
JFL - I am soooo mad at your pathologist! I am sorry that happened to you.
~Kar
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Merry Christmas!!
Awake and feeling thankful that you all took the time to share with me. I'm happy to have today off from rads as yesterday's treatment knocked me for a loop--& it's only #4/10. It amazes me what we will push on our bodies, but I'm in it to win it for as long as I can for my kids. Really working to muster up some energy and Smiles for them for Christmas, as I want to just be mom for them and not the she'll of myself that I am right now. I'm so sorry for being down, and I appreciate you all allowing me to express myself when I am working so hard to be upbeat for everyone else.
When I return to rads on Wed, I will see my RO and nurse navigator and ask about the ascites. And thank you KarPC for the bolster stretching idea-- I have one and will try such. Should help my lower back too which is also in a ton of pain-- not sure if radiated pain from abdomen or pain from constantly on my back in bed with little movement over past several weeks. I'll give it a try!
You are amazing women and I appreciate your uplifting spirits! Enjoy the celebration of the birth of our Savior!
Gina🙏🏻💕
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Thankyou cancer and Carboplatin, just ended my Christmas with an admission to hospital with an infection of unknown origin although I'm not neutropenic. Left 3 of my kids in tears with little Miss 9 crying and saying I'm worried you are going to die mummy. 😢 What a way for them to remember the day.
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Tennille76, I'm sorry you're having such a difficult Christmas day and I pray you recover well and God comforts you and your children.
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Tennille, praying the hospital figures out what is going on and gets rid of that infection so that you can return to your family. Tough to have that happen on Christmas.
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Hate hearing of your infection Tenille, and of your sweet children's worries over their mom. Praying for all of you now ! Please let us know how things turn out. 🙏🏻💕
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Tenille, I hope you are feeling better. MBC is a rotten disease. It takes so much from us. I can only imagine the heartache you felt when you saw you children crying and heard your daughter say she was worried thatyou were going to die. It is good that she is able to voice her fears, but I know it is difficult for a mother to hear. You and your family are in my prayers. I hope you improve and return home quickly.
Hugs and prayers from, Lynne
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My BX today was a success. He saw the lesions on US and got several pieces to send to pathology and to genomic sequencing. I think to Caris. Pathology will be back in a week or two but Caris will be two months.
Still hoping it will show something that will lead my MO to different, more effective treatment for me. Meanwhile, I will start AA next week.
They used the good stuff for my sedation so I didn't feel a thing. I did have to stay on my right side for three hours. They worry about bleeding with the liver.
Happy and relieved that today is over and successful.💞
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glad all went well Grannax2.
May you get the results that help find the right treatment for you.
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Glad to hear it went well!
My PET is tomorrow and BX is next Friday. I’ve stopped Ibrance and Faslodex and the plan is weekly Taxol.
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Grannax, so glad that it went well and I'm hoping for a good path forward!
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Grannax, glad biopsy was successful. I can't believe Caris takes 2 months. I heard F1 and Caris are inundated because all the NCI trials require their tests. I received an update that my F1 results will not arrive until Jan. 9.
Started Halaven today. Relieved to start something as it is now looking like the earliest I could be in the FGFR trial is February. Halaven is easy injection but these cold caps are so traumatic. I only had to wear the cap for 2 hours after Abraxane but 3-4 is recommended for Halaven (and now 3 is even recommded for Abraxane). I have an hour and 15 minutes to go. I am doing 3 hours, cannot stomach 4. The cold caps make me nauseous and I am trying not to vomit right now.
Thinking about everyone in this thread.
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That sounds miserable JFL. The things we have to endure are just unending.💞
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Sending love and light to all in this thread. I have been thinking of you all, veering from hopeful to heartsick and back again.
Grannax2, glad you were able to get the biopsy.
JFL - so many screw ups, I'm so sorry! What a (literal) pain.
LisaJo - My sister is in an immunology study for triple negative. Her latest scan from 2 weeks ago (she gets them every 8 weeks) shows stable mets in liver. Another friend also just found out she has MBC with mets in bone and liver. She is now on xeloda...Hoping your MO will find an appropriate trial or plan for you soon.
Joy
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Thankyou all for the kind thoughts. Stayed in hospital for 2 days but no antibiotics. Tried to get pain from the tumour in my brachial plexus under control.
Anyone who had the Y90 what were your LFT'S like for a couple of months after? Were they all over the place? Mine are and I worry sometimes that maybe it's not working.
The hospital Dr was very dismissive of my blood tests saying it's just tumour death but my Oncs never say things like that
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so in one week my bilirubin went up from 2.7 to 9.4. My other levels went up also. I know am slightly yellow. I had a scan today. My assumption is I am going in to failure. Has anyone bounced back from this-a new chemo? I was doing so well on carbogem. I am trying to accept the fact that my oc will put me in hospice So sad.
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Tennille, my liver function tests were all over the place for months after treatment, while it was doing its job putting the tumors to sleep. I recall the worst being right around the 2 month point.
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lisajo6 my bilirubin was 17 the other day which is the highest it's ever been and I'm not yellow at all. Dont give up there are so many treatment options out there and even my Onc tells me that.
Thanks JFL I have a PET on the 14th Jan so hopefully that will ease my mind a little.
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My blood work never showed any of the liver numbers changing. I think I'm really fortunate. Lisajo I've heard that some patients can have a stent put in to open up the bible duct. Maybe that's an option for you, I sure hope so. It's done with endoscopy, a pretty simple procedure. 💞
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lisajo6, my sister went yellow from having chemo when she wasn't in liver failure, so maybe it's the same for you. I hope so. I'm sorry you're so worried and I pray things get better for you and you get treatment that helps you.
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Hello All,
My current team of medical specialists now includes a heptalogist since I developed RILD (radiation induced liver disease) from Y90 and at present I am stable. Between the effects of abemaciclib and the Y90 treatments, I have lost significant weight. It is slowing down and hopefully I will stabilize soon. My scans, CT's and MRI are ordered for mid January, then I see the IR doc and go over the scans, MO for discussion and the heptalogist to discuss the liver. I also see a hemotologist if my hemoglobin drops too low. Sometimes I feel like my life is dominated by my medical issues, however, I am grateful for a good team.
For anyone considering Y90 treatments, a discussion about the chances of developing RILD should be discussed. I don't regret the Y90 procedures as I had few options left but be aware.
Thinking of all in my meditations,
Kathy
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