How are people with liver mets doing?
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Hi ladies! Beautiful, that’s good news! Here’s hoping and oraying the rest of you tests come back consistent.
Grannax, thinking of you, hope tomorrow goes well.
Had my liver biopsy today. Did they put me out? No. I was awake during the entire thing. They gave me enough meds to make sure I didn’t have much pain, although I did have some. Am sore tonight and it hurts to breath too deep. Will get results next Friday.
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HLB! Love your response... I need to follow up with that soon
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Sandilee: I have been on carbo and Gemzar for 20 months for triple negative mets to liver. Has been an easy chemo regimen for me over all. Constipation, some fatigue, take neulasta to keep wbc up, and nausea but zofran takes care of that. Still have all my hair.
Hope it is a great regimen for you.
Tricia
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leee: I hope carbo and Gemzar work for you. Been on the regimen for 20 months. Decreased my liver mets from diffuse to very little cancer in liver now. Easy chemo so far. Still have my hair. Side effects include some fatigue, constipation, low wbc (neulasta), and nausea (zofran).
Tricia
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Tina Marie: have you been on carbo and Gemzar? Seems to work well with triple negative with BRAC mutations. I have the PALB2 mutation which is in the BRAC mutation family. Been on carbo and Gemzar for 20 months. I hope it keeps working. I still have my hair too.
Hope your new treatment plan works for you.
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Hartrish,
Thank you for the response! 20 mo is great!
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yes, Hartrish, thank you! Im going to ask about it.
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Good evening all,
Thinking of how you're all doing?
How was your scan Mimito?
Gracie-I hope you are feeling better from the biopsy.
And I hope the carbo/Gen combo works for everyone for at least 20 months and more
I'm glad you each have another to compare notes.I started my Cycle 1, Day 1 of Xeloda today. I have not had treatment for a month (Ibrance/Letrozole immediately failed) so I'm hoping this kicks in quickly. My tumour continues to stretch the capsule and irritate the diaphragm so a tumour regression would be a welcome outcome. Then I can cut back on my pain meds.
Have a great night!
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Kayla, good luck on X. Great drug. It worked quickly for me after I failed Ibrance and ended up with a liver explosion. One forewarning, all my markers shot up for the first 4 months (tumor markers, AST, ALT and alkaline phosphatase) while it was putting my liver mets into sleeper mode. By my 3-month PET, my liver went from being 70% mets to all mets being metabolically inactive (NEAD) and significantly smaller. The mets continued to shrink for a year.
Hartrish, 20 months on carbo/gem is great. I hope you have at least 20 more.
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thank you, JFL. I hope it last forever. I know that is asking a lot but I keep hoping it works for a long time.
Best to everyone
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Thanks, Hartrish and Jennifer for responding with Gemzar/Carboplatin successes. So encouraging to hear!
Are you ever able to take time off from the treatment? I have some trips planned this summer, and the two weeks on/ one week off schedule would make that hard to do.
OMG 20 months! That's fantastic.
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sandilee: I have not taken time off my 3 week cycle but I am sure your could talk to your MO about doing that for your trip. I did miss week 2 Gemzar dose once because I was sick with norovirus and in the hospital
I am truly blessed with being on the regimen for 20 months. All praises go to myAlmighty God.
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I have a plan, finally. My new MO wants me on Xeloda 3500mg each day for two weeks, one off. I need to start as soon as possible. My PET showed that all mets in liver, lung, pleural effusion, fluid in lung, lymph node in mediastinal area are all getting bigger, more uptake, even some new ones in my lung. I just pray these mets all respond quickly to Xeloda.
In some ways it feels like I'm starting over. She will scan in two months. Then depending on results she will be open to talk about y90 although she says I will have to be off X while I'm having y90 because X is a chemo, ibrance is not.
It's good to have a plan again.💞
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JFL - NEAD, I’ll take that for sure!!!! I hope your current treatment is doing that well for you.
Grannax2 - I’m so sorry that you have so much progression in so many areas. I have high hopes for Xeloda too. As JFL mentioned I’m preparing for a temporary raise in liver enzymes and markers for the first few cycles.
Thoughts and prayers to all...Good night.
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Grannax, I know that not the news you were hoping for, and I'm so sorry to hear about all of the progression. It's always a gut punch. I hear good things about X, and I think your new doc is smart in planning a new scan in 2 months. Peace and comfort to you, my friend.
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Thanks ladies. I'm just ready to take those pill! They won't be here till next week. I feel I've wasting time, now is the time. Let's just do this already!!!!
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Prayers for you Grannax. You can do this. I can tell you are one tough cookie.
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grannax- xeloda was a wonder drug for me. Kept me NED for 5 years. You will have to adjust to the SE and the can be different each cycle. I hope it works great for you. The xeloda group is amazing.
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Grannax, I'm glad you have a plan! Were you happy with the way your new MO handled discussing the results and possible options?
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Kayla, thanks so much, am better this evening! Still a little sore, especially is I do something I shouldn’t!
Grannax, so glad you have a plan in place, I sure hope I can go on xeloda.
Not sure how much longer I can do all this. It’s all just so danged hard
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Stage 4 boards seem very quiet today. I'm hoping everyone it out having a good time and enjoying life.
Gracie - I'm six months into this stage 4 dx. In the beginning I thought it was over but found so much hope hearing about how Ibrance was doing wonders with patients. After finding out that Ibrance failed and my tumours double in size and number, I felt hopeless again. But now 4 days into Xeloda chemo I, somehow, found that hope again. I can only imagine how many ups and downs you've been thru in 3 years. You'll get thru this low point, as you have always done in the past. Our hope is in the next amazing treatment breakthroughs.
Good night and a peaceful sleep to all.
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Gracie, I’m glad you are feeling better. I’m sorry you are sore, I guess that means you should rest and give yourself some grace.
I have been NEAD for 3 years and have just started having bone pain in my upper arm. It is more like an ache, really. My MO’s office is scheduling a PET CT. I don’t even know what I hope for, I just want the pain to go away.
Good night, have a restful sleep, everyone
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Thanks ladies, I'm loving hearing about years on X, that's what I want to do.
Katty, I was a little puzzled when she said We only have phase 1 clinical trials and it would take three more weeks to get you into one. YIKES phase one only, no way! Then she said I don't think we have 3 weeks to wait for something we don't even know will work. She said I like X let's get you back on it ASAP. I said Yes, M'am. How soon, tomorrow? Lol
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Also, I want to vote on re naming our thread. How about: We fight liver monsters, only FIERCE ladies allowed!
Votes, vetoes or other ideas?
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Thinking of you all with your tests, and what you're going through. We're happy to re-name the thread, if you all want (-:
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Grannax, I think you've found yourself a GOOD MO!!! YAY!!!!!!!!!!!!!!!!!!!
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Hello dear sisters in this ugly fight for life.
I've been moved into hospice. As a terminal patient.
In 1993, I began my journey,, in 2002, 2005, and finally I consented to a mastectomy in 2012. Still ok, doing what I wanted in life.., I've been retired from a long development career. In late 2014, I noticed pain on right side, and then it began, I've had 2 genetics tests and I'm perfectly normal. In the last weeks, a slow giving up because I love life.
I feel a deal of sadness for young mother trying to live a normal life...
WithLove,
Peace and joy .
Kathy S and hubby Jürgen...
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Max_Otto (Kathy and Jurgen), I am sorry to hear that you are now in hospice. This disease is ugly indeed, and it does terrible things to us as it destroys our lives. I wish I had some wise words to give to you, but there are no words that can express the way I feel. As someone who loves life, just as you do, I know that it is unfair and painful to have days of that life taken from you. I hope that you wrap yourself in good memories of your wonderful life while you continue to create new ones.My heart and prayers go out for you.
Hugs and prayers from, Lynne
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Gracie, I am glad that you are feeling better. Did your doctor tell you how long it will take for the pain from the biopsy to go away? When will you have a treatment plan in place? I hope you don’t have to wait too much longer.
Grannax, I am sure you are becoming frustrated from all the treatment delays. The good news is that you are only a few days away from stalling those first xeloda pills. Btw, I would not want to be in a phase one trial either -scary stuff. Maybe some day I will change my opinion, but the circumstances would be extreme. I am sure your grandson will have a great competition. He is very talented. He might not win this competition, but even if he doesn’t, there will be more. He will keep improving and getting stronger as he grows.
Luvmyfam, I hope you have your PETCT scan soon. I know you want that pain to go away, but I hope the scan shows that it is not from Mets.
Hugs and prayers from, Lynne
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Max_Otto- My prayers go out to you. May you have peace in your heart at this time.
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