How are people with liver mets doing?
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LFF. Hoping you get better without having to stop your meds.💞
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LFF, hoping your team gets this figured out and you won't need to stop treatment. Thinking of you and pulling for you. Sending strength and hugs.
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LFF - praying for you and for best possible outcome!!
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LFF - you will feel so much better after they juice you up, but I am so sorry that this is happening to you. I am holding you in my thoughts and heart and here's to better days ahead.
Katty
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update
Mom underwent TACE 2 days back , she was alright the first day , then she got agitated and hardly ate anything , she is currently on liquids and responding very minimally . Sleeping most of the time , hardly talkin
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Anyone that has had a liver blockage or tumor in the duct...where was your pain? I have pain in liver (down low at the bottom of your bottom rib)....was the pain in this area with tumor in liver or blockage?
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Nicole, both times I experienced acute new liver pain in the past, I had a CT scan. The scan located the abcess in one case and a growing tumor in the other. Sometimes the location of pain is not where a tumor is. Another time I kept pointing to a spot in the front of my abdomen near my ribs that hurt when pressed, thinking there was a tumor there, and my onc explained that it was from enlargement due to a tumor at the back of my abdomen. My early symptoms of bile duct stricture were more subtle, with more belching and a vague ache below the sternum. All of which is to say, I think a scan and maybe an endoscopy are more reliable than pain to tell you what is going on and where. By the way, the two of us here on BCO with bile duct involvement both have ILC. It goes to weird places. But you have IDC.
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Faripari, I'm so sorry your Mom is having these complications. What is her MO saying or planning to do now?
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Shetland..thanks..I do have IDC but it has Lobular features according to the biopsy and surgical reports.
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Nicole- My records say "lobular features" too. I thought this was a weird way to say it. My BS said "lobular breast cancer" when she told me of the diagnosis.
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Nicol , I have been thinking of you . Your stress is palpable. I want to help and feel powerless. I have switched on for the first time aroma diffuser that a friend got me for Christmas- I never in my life used the stuff like that - I must say I enjoyed it and it did help with stress. (Mine was not the scariest progression monster so was easier admittedly...)
I used sandalwood...
Hugs. Sending you support vibes.
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Thanks Anotherone...believe it or not I don't really feel THAT stressed. I am anxious right now because my scans are tomorrow and tuesday and I am fairly positive that I have progressed..but this time progression feels like A LOT of progression compared to the other times because the other times I wasn't having consistent pain. Then again what do I expect..I am 1 year out from diagnosis and not 1 treatment has worked...I know I had Stage 4 for at least a year before the diagnosis due to the pain in my sacrum so that puts me now at over 2 years with Stage 4 and no treatment having worked to stabilize or stop things...so that basically gives me 1 year left (IF THAT)....
I just looked at the original post for the start of this Liver Mets thread...the woman joined in 2010 and last posted 2013...3 years...that was over 7 years ago..and basically I am heading to fall right in that 3 year mark at this rate. Just sucks...it just....really sucks. I wanted to have at least 1 treatment actually work. Its one thing to know in my own head and heart that the treatment is not working (which I have been right so far every treatment I was on knowing it wasn't working) so I don't see this time being any different especially since my pain is more regular now than it ever was..but then actually having to wait and this week now and just see her face (MO) when she walks in with that disappointed look...I am sure we have all seen "that" look we know it...it just SUCKS. I know what some of you are thinking...just because something hasn't worked yet doesn't mean the one that will work is not next...yea...maybe that miracle will happen...but ya know what...its so hard to cling to that when I haven't had NOT 1 work!!! Unless you want to include Ibrance that worked for only 3 months and then everything grew back. On top of not only probably finding out I progressed and worrying about what will be next...I have already spoke to my IR about getting TACE..but now I have to worry how much and how big progression is...if he will even be able to do anything. It just gets discouraging.
I guess I am grumbling here...I don't want to be a grumbler...I am sorry. Up coming scan week suck.
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Nicole. I won't say I know how you feel. I am glad you feel safe to share how you feel here. If we can't share here, where can we?
I've found its too hard on my friends and family. Sometimes, they even say things that tell me they don't get it. Or, they don't want to get it or cannot bear to get it or they fear they will fall apart if they get it.
Welcome to my world, I think but don't say. But, I can say it here. Everyone here gets it. PTL for all of you. 💞
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Yes, Grannax...most of all I hate when they say "don't say that..you sound negative you need to be positive all the time"..... UGHHHHH Just stop!!!! How about ...I am being REALISTIC!!!!!
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Nicole, grumble away... we do understand the need to find someone to grumble to. I know for me thoughts of leaving my family too soon are always with me. They don't understand my "dark" humor. I will be praying for you this week.
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Nicole- I am so sorry. I cannot imagine what you are feeling. I am feeling some "survivor guilt" right now as I am still on first line therapy and 2 1/2 years in. But, too, I know that can all change in the blink of an eye. I too look at profiles of the posters here. And I compare to myself. When we lose someone here, I always look at where their mets were, the timeline of their progression, and compare to me. Yes, I am on first line Ibrance, but median success with that is 24 months and I am on cycle 31. Tick, tick, tick. The clock is counting down.
I am praying for you this week.
Many hugs right now.
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First to Nicole, I am holding you in my heart. I so wish I could do more for you than that as we travel this terrifying journey.
For others here, I do hope you don't mind my cross posting a question from the Ibrance board.
I've had a very rough and complicated few weeks (as some of you saw on the other board). To try to make a long story shortish -- two weeks ago I suddenly wasn't feeling well. I made it to my regular monthly MO appoiment but when she saw the blood results she sent me to the emergency room and I was hospitalized for several days.
I didn't know what a liver enzyme was before that day but boy I learned. My ALT (which had apparently been very slightly elevated a couple of times over the last year) had leapt to over 1000 and AST was 800. I had a million tests in the hosptial (blood, heart, ultrasounds, EKG) and nothing turned up. Five blood tests later my enzymes have come down about 40%. On Wednesday I had an MRI and my liver was clear and looked healthy. MY MO now thinks it may have been "drug induced injury/failure" (possibly cause by the Ibrance) and was somewhat reassuring.
But the NP released all of my test results on Friday night. My CEA -- which had never before been elevated-- jumped from 1.7 in may to 192!!! I totally freaked out!
BevJen commented that it might be part of that same situation -- i.e. the liver injury driving it sky high. From perusing the internet, it's cleat that liver injury can elevate CEA. But 60X normal? I find that pretty terrifying.
I hate to re-open the age-old tumor marker discussion but I'm curious what the experience of the folks on this board has been. Anyone see or hear about anything like this? Do markers suddenly skyrocket like that? If so, what can that mean?
Thanks in advance to friends new and old.
Penny
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Faripari, I'm holding you and your mom in my heart. Nicole and Penny, you are both in there as well.
xoxo
Katty
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Nicole - Thank you for your honesty and for sharing what is in your heart, mind and soul. Thank you for trusting these amazing people on this “journey” of breast cancer. I will be praying for you this week for your scans and best possible outcomes. I hope you can find strength in God to help you through. So many of us will be thinking of you and praying for you
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Penny, thanks, I think you just need to give ALL your numbers a chance to regulate once you stop Ibrance it will probably take at least 9 - 10 days to be normal.
Intothelight..."Nicole- grumble away".... lol thanks. I felt bad mostly to God...I know I sound like His people in the wilderness constantly grumbling.
Thanks Katty and Candy (((((hugs)))))
Hopeandgra...thank you ...yes please pray the Lord has mercy on this situation...and me.
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Nicole, God doesn't mind if we grumble as long as we maintain holy love along with it and seek His will. That is hard to do when we know we will never feel "good" anymore. It changes our perspective. And I agree that I feel like I am just wandering aimlessly in the desert!
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update about my mom
She is admitted in the hospital with hepatic encephalopathy she was agitated and not responding and I knew something was wrong so I said my family to take her to gastroenterology specialized hospital where her MO is there too , it’s a good hospital affiliated to Mayo Clinic . She has a food pipe and urine pipe now , still not responding her mo is after her . The tumor load in the liver is high and post TACE the liver couldn’t compensate and hence couldn’t eliminate toxins thereby building ammonia in the body leading to encephalopathy and mood changes , her liver is not making clotting factors too which is also disturbing her Hemoglobin is low too so the MO and gastro doctor following her for any internal bleeding also ruling out any brain Mets , brain MRI was clear no brain Mets and hepatic encephalopathy did not damage or make the brain swell that much so that means her condition is reversible Inshallah she will again talk to me on video call which I am waiting so badly I miss her . As far as coagulation factors are concerned she is given cryoprecipitate (rich in clotting factors) and blood transfusions . Till now she is in ICU and my father Is outside coz covid doesn’t allow visitors .
Please pray that her condition stabilized and liver gets fixed and regains it’s function . My mother was due to travel to chicago in 2 days but now I cancelled tickets . Today is my first marriage anniversary , me and my husband are in no mood to celebrate .
Please pray May Allah give her speedy recovery . I really miss talking to her on video call and seeing her face when she laughs on my silly jokes .
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Anyone know if having sugar levels higher than usual also coincided with progression??? My sugar at the PET this morning (fasting) was 107 highest its ever been...
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My doctor called me with PET results...not good. The 2 tumors in liver have grown and the smaller one is now brighter. but thats not even the worst part. Todays PET scan found a new lesion in C7 and I am Panicked. She called me at home to go over results since there is a new tumor...she also said the one in the sacrum looks like a fracture might be there. I did have 3 sharp pains in the sacrum like a few days ago but that was it. then just the normal constant uncomfortable - ness of it. She said she wants a MRI of Thorasic and Cervical... and she mentioned about talking to the tumor board thursday morning (before my appt) to see if we should radiate it...and something about being worried about future... spinal cord involvement I am freaking out.
Hope and Gratitude.... and Into the light.... Heavenly Father God of Abraham, Issac and Jacob cover me right now. Take away all my fears and hold me in Your hands..
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Heavenly father, hold our sister NicoleRod in your hands. Cover her with the peace of your mighty arms in this time of distress. Grant the doctors wisdom and may they find solutions to the problems that are presented. We praise you in advance for miracles and blessings.
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Nicole sorry to hear this. It's not the news we wanted. I hope your faith keeps you strong and the MO and tumor board come up with a working plan for you. Gentle hugs
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NicoleRod- I am on my knees.
Dear Father, You who are all merciful, hold Nicole in your gentle loving hands and let her know that You are with her, by her side and You will never leave her. You are there with her in her fear and in her pain and thereby sanctify it. We are bound by looking through an earthly lens and we do not know or understand your eternal plans. Nicole, your precious daughter, has a vital role in that plan. Please hold her tenderly. It is not ours to ask, but we know you are able to do great things; all things are within your power. Please give Nicole peace, comfort and strength and let her faith remain strong in You. Please watch over and guide her doctors as they treat and care for her well being. Amen 🙏 Amen
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Nicolerod, I am also providing you with support. You have not had a time when you could just breathe and have a long break from worry.
It seems your MO will address the most urgent tumors first and makes sense to bring your case to the tumor board.
Have you had a fresh bx to see what mutations are wrecking havoc? Are you still Hormonal positive?
Is your MO lining up a 2nd opinion?
Maybe targeted therapy, followed by a systemic to kill those assholes? I don't have experience with cervical mets, but hopefully, our bone mets friends will give input.
Just know, you are not alone.
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SandiBeach57-
Thanks for sifting through. Hopefully helpful to Nicole (and me) to hear from someone who has been able to have a break on the “worry” front. You bring up excellent points. I think the board will be useful in their strategic plan of attack and questions that still must be addressed to formulate longEr term plans.
Nicole - are you on xgeva? They may start you on that for bone mets. Not sure what hormonal tmt you had, but If ER+, They may consider faslodex in addition to xgeva. It’s a possibility, but wait to hear what the board has to say. Radiation is a standard treatment in the bone met arena, palliative, reduce tumor, reduce pain but also sometimes in a “curative” mode for bone mets. It seemed from your message you didn’t necessarily get a clear picture from your MO, as happens when we hear “bad or unexpected” news. Can you set up a telemedicine callwith your MO and go over results a little more slowly before Thursday? It may help.
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Hope...AMEN thank you so much for your prayers! they mean so much to me.
Sandi..when I read " You have not had a time when you could just breathe and have a long break from worry." I just lost it...sobbing...I felt so ...validated I guess.. wow. I am sobbing but I think its because I just feel so loved from all of you and so validated and so UNDERSTOOD.
I am suppose to hear from my IR about TACE for the liver tumors she is going to ask him if there is anyway when he does the TACE if he could get a biopsy for a new F1 ...so we will see what he says...if he can't then we will probably be doing the Liquid F1 Biopsy.
The MRI's have all be scheduled for tomorrow morning. I see her Thursday. I did send her about 7 trials I was interested in (over the past 2 weeks) she said she has a few more to get through of them...we will discuss that..and I suggested Verenzio/Faslodex/Affinitor combo (thanks to the help of Cure-ious)...she is open to that too. But...she needs to speak to tumor board Thursday morning first to see if they feel that tumor in C7 should be radiated...Im not going to lie...I am a little scared but trying to stay strong and calm in Him...who is in control of all of this.
Hope my first line of treatment was Ibrance/letrozole/faslodex and xgeva..I got hives from Xgeva and we did Zometa...but only 2 times..I asked to stop because of the devastating effects that people had and I didn't have Extensive Bone Mets so she agreed. I am hoping to go back on faslodex so we will see what she says.
(((((((((((group hugs))))))))))))
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