How are people with liver mets doing?
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Nicole- I am so sorry for your report. Prayers for peace of mind, good plan going forward and healing. This stinks!!! I know your feelings. My first 3 lines did not work. My current line plus local therapy got some shrinkage but the lung met grew. 🙏🏻🙏🏻I am praying hard that your team finds the right treatment that arrests the cancer. Grrrr
Fairipari- I am so sorry that your mother is going through this horrible time. Prayers that she recovers and gets to come to the USA to be with you. Please let go of the circumstances long enough to celebrate your anniversary. 🎉A little joy goes a long way in helping us through the dark times.
I try hard to enjoy each day for the gift it is. My thankfulness for the good things no matter how small helps me get through. One day at a time is so true! I try to embrace the moment and attempt to be totally present- the feeling of the sun on my shoulders, the gorgeous dragon fly that just flew by, the smell of fresh cucumber just picked from the garden.
Mourn with those who mourn.😢 I weep for you all suffering from this awful disease.Cancer sucks and we all know how hard it is to live with it everyday. The fears, anxieties and bad reports add up. Thankfully we can vent here, get advice and share experiences.
Blessings,
Dee
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Hi All,
I will chime in reponse to SandiBeach's shout out to bone mets folks as I have diffuse sclerotic mets throughout my cervical spine and the base of my skull.
Nicole, so sorry to hear that you again have progression and can understand why the C spine mets freaked you out. It's darn scary - I told my MO it's way to close to some important bits (to which he responded.. they are all important bits). In my case we aren't sure when they appeared. I only have CT scans not PET and according to my MO they don't typically scan the neck as it's an unusual place for mets to show up. They were found when I reported numbness in my right arm. From my own research I learned that skull base mets are extremely rare.
Having said that, my MO and RO are not overly concerned provided there are no worsening symptoms. The arm numbness disappeared - most likely due to some impingement from scoliosis and degenerative spinal canal narrowing. We thought we might need to radiate as I was also dealing with mild right facial numbness which comes and goes a bit. It hasn't gotten significantly worse so I prefer a wait and see approach given the potential side effects from radiating the C-spine/skull base which can be significant.
All to say Nicole that, while the news of progression is bad, I am not sure of the significance of the C-spine met in your case. I would recommend you ask your MO how concerning this would be on its own. I suspect she is concerned about spinal cord compression but could be wrong.
Sending gentle hugs Nicole. I sincerely wish you could catch a break and find a treatment that allows you to coast for a while.
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Faripari - I’m sorry to hear the difficulties that your mom is experiencing. I’m glad to hear that her brain has not been permanently injured. I pray she becomes stable enough to travel as you had planned and be with you. I’m sorry you are receiving this news on your first wedding anniversary and so hope you will be able to enjoy some precious moments with your husband today while you wait for updates on your mom. I can hear the love for your mom come through in your posts. I pray for her recovery and hope that you receive some encouraging news soon.
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Sadie... so I am hearing all over facebook of radiation to spine and people doing great...but I did have a extensive bone met friend that just passed and I remember her saying something like radiation made things worse..but I don't remember to what area...I though it was thoracic spine....but I see you say radiation to the c-spine is different /worse, but you said skull base... isn't C7 right at the start of thorasic not at base of skull...does that make a difference with regards to radiation? ughhh.
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Sorry Nicole,
Please don't interpret my comments as indicating the radiation would be "worse". Yes, C7 and skull base are two quite different things. It depends on what will get caught in the field. My RO was not concerned about doing it but mentioned some side effects such as a sore throat that could persist for about a month, etc. I just wasn't keen unless things got worse in terms of the numbness issues. A big factor in my decision is that I have bone mets everywhere. It's not likely zapping one of the little buggers was going to help slow down progression. For that reason my radiation has focused on relieving symptoms and I try to be judicious in using it as you can only radiate one area so many times.
I've had radiation three times already for pain/symptom management with varying results. I had rads to the lower back to deal with some severe sciatica - it was great, few side effects and completely resolved the issue. I then had rads to my hip - not a complete response and had some discomfort (in particular it caught the vaginal wall with all its nerve endings... uncomfortable for a couple of days). Finally, I had rads to the sacrum/low back again to deal with pain - good response but I made the mistake of eating lunch before I went... bad idea... and I had some discomfort for a few days as the skin on your low back is very thin so tends to react.
Happy to answer any more questions if you want to PM me.
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Faripari, I am catching up on previous posts and read about your mom.
You are a very caring soul with so much compassion. I hope you will consider medical oncology as you continue your medical studies while in the US.
The liver is tough. It sounds like it is an acute crisis due to TACE and thank goodness her symptoms are reversible. That is good news. And no cancer in her brain..also good news.
i pray that you will reunite with your smiling mom via video chat. Those toxins will eventually clear her brain.
Make plans to celebrate your 1st anniversary, even just to hold hands and repeat your vows. It is okay to postpone as there will always be wedding anniversaries.
I have a 30+ year old daughter. I know she gives up doing things when she is worried about me. Drives me crazy, but her love for her mom is like your love for your mom.
Whatever happens, your mom knows that you love her.
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Faripari, my heart goes out to you, being so far from your dear mother. You are a fiercely devoted daughter, and I know your mom feels your love traveling from far away to where she is. May she have a smooth recovery and become well enough to travel. Some anniversaries are times to remember how you promised to be there for each other in difficult times, like this one. I hope you can find some special moments together even as you are thinking of your mom.
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Nicole, deep breaths. Give your good team a chance to figure it out. I’m so sorry you can’t seem to get a break. Nobody here will blame your for “grumbling”.
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Faripari, so sorry to hear about your mom and the sudden turn of events. It must be really hard for you to be so far away and not be with her at this time. Hopefully all the measures taken by the doctors will work and your mom will start smiling at you on the video chat again.
NicoleRod, I can totally understand how the news of progression feels, having had to go through this myself last week. I have had C7 mets (along with mets through out the spine) and got CyberKnife treatment 5 years ago. This helped keep the tumor under control for a long time (2-3 years).
After that I had radiation to the upper thoracic and lumbar spine areas. These days the radiation oncologist works closely with the neurologists to map out the area of radiation, so no nerve or nearby organs get affected. I have had no after effects of radiaiton - in fact each time, my pain level went down drastically within 2 weeks of radiation.
Please keep us posted about your MRI - hopefully everything will go smoothly and you'll have positive news of no nerve or marrow involvement.
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Faripari, I'm sorry your mom's trip had to be cancelled. I hope she is able to travel soon. Best wishes
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Hi NicoleRod,
I am so sorry about your progression. I hope you find a new treatment plan that works with little SE. Verzino worked for me for about 14 months. The first month was difficult but after that limited SE.
I have had spinal involvement since mets dx in 2014. Tumors have twice been radiated and I had cement augmentation on 3 vertebrea this year. I have a tumor on C 6 that they just like to watch. I think treatment there would be tricky. But system therapies have kept it stable and other than too much time with my radiation oncologist the spinal involvement has not impacted my life.
I wish you much peace and good luck
Mary
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NicoleRod, I am holding you in my heart like many others here. I will also add a tiny bit of encouragement about the bone met. My spectacular collapse in late 2016, whcih landed me in the emergency room, was from a bone met hitting my spinal cord. (I was de novo so no one knew what the heck was going on.) For weeks, talked swirled around me like I would be paralyzed and end up in a wheel chair. The sound and drama of it was worse than the reality. I've lost just a little bit of mobility (i.e. I can't walk as fast as I used to) but it's not a big deal. Often it sound smuch scarier than it is!
BIG HUG,
Penny
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faripari- I am so sorry you have to be so far away from your mom while she is going through this ordeal. It must be frustrating and heart wrenching I pray in a short while the toxins will clear and there will be a better outlook overall. It seems she is getting good care. I hope you can video with her soon and maybe you will be able to book a new ticket to bring her into the states.
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Thank you so much ladies I feel so loved.
S3K5.....Who does Cyberknife a neurologist? I didn't even think about Marrow or Nerve..OMGOSH
Marrow 0 -
the liver doctor said that my mom has bad prognosis because she has a 15 cm lesion in her left lobe (basically the whole of left lobe ) the labs are improving but clinically she she is the same with altered senses . And that he said if my mom would have done TACE or not nevertheless she would still go into liver failure . Please please please pray for my mother
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Faripari - sending prayers to you and your mom. Hoping there is improvement in the daysahead and you are able to talk with her soon via video.
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NicoleRod - keeping you close at heart today. I pray for best outcomes possible for you with the MRIs. I go for MRIs too later today of my spine - thoracic and lumbar. Then pray, trust, wait.....
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Faripari, I am praying for your mom and for her family.
The liver enzymes are improving..so praying her liver will heal and clear the toxic load from TACE. This is a stressful time..the waiting is so emotionally painful.
We are here for you.
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I am trying to keep up from my hospital room: sorry if I haven’t sent an individual response.
Thinking of everyone and praying for you all. Wish I coujd be there for everyone in person.
Take care
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LFF..have they made the dx yet of what is causing drop in hemoglobin? And if so, what is treatment?
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the liver doctor said it’s very bad and to call family , I don’t know what to do I am dying here tears don’t stop . Pray that the healthy part of liver compensates please pray for a miracle . My mom wanted to come to America she wants to see my children and that I get MD . She is not responding to any verbal commands . , today for the first time my dad cried in frnt of me I am shattered . Please pray for a miracle
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Faripari, I’m so sorry you’re dealing with your mom’s crisis from so far away. Prayers for your mom, you, and your family. 💕💕💕
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Faripari, sending prayers for your mom and your family. May God hold you and your Mom and Dad in His arms.
LeftFootForward, praying they find a solution and your hemoglobin rises so you can go home.
Nicole, continuing to fill this day in prayer for you.
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NicoleRod, the Cyberknife to C7 was done by the Radiation Oncologist but a neurologist (actually a neuro-surgeon) helped him with mapping the area. I felt pretty comfortable that they took some time to do all the planning.
I don't know if you'll be getting regular radiation to C7? I don't know if this is even possible, considering it's location. Systemic therapy (Ibrance+faslodex) for the next 18 months kept the tumor stable and even became non-active on the PET scan.
I was scared when I was first diagnosed but after the treatment plan was in place, things went smoothly. Hope everything goes well with you. Please feel free to reach out to us anytime you feel overwhelmed.
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Faripari, I am sorry your family is going through this. Where there is life, there is hope. IF it is your mom’s time to go, maybe it will comfort you a little to know what my doctor told me, that when the liver fails the patient gets very sleepy and slips away without pain. But we are still hoping for your miracle.
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LFF, I’m sure the others will agree with me when I say we do not expect you to keep up and make individual replies from your hospital bed We are just glad to hear from you and know you are ok right now. Hoping you will be better very soon.
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Shetlandpony, how are you doing with those low grade fevers? Can stent be replaced sooner? I hate to know you have to go thru this every 3 months.
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Farpari..sorry about your mom. That is one thing my IR said about TACE.(I had actually asked about if ascites>spelling? could happen as a side effect) he said it can be toxic and have more complications when the tumor is large....he said small tumors do not usually have any side effects except maybe flu like symptoms for a few days.
Hope and grad. Praying for you during your scans. Into the light...thank you (((((hugs))))) AMEN!
Scans were hard almost 3 hours in that MRI machine...I had bad post nasal drip and swallowed a couple of times when they were scanning the Cervical part and it messed it up...
Results Thursday love you all so much!!!0 -
I tried asking suggestion before giving mom green light for TACE . I wish u could tell me then , maybe my mom would be better with just systemic chemo and not TACE , the liver doctor said no matter she was doing TACE or not her liver had gone into failure . Then I wonder she had been on Ibrance for 3 months not working but still nothing happened to her .
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Faripari,
You should not be blaming yourself or engaging in "what ifs." You are being a really good daughter, and also with your medical knowledge, can weigh these things better than most of us. I think with any procedures to the liver, there are risks. For this, it was a risk/benefit analysis.
Prayers and thoughts for you and your family.
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