How are people with liver mets doing?
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Momall. That's just unbelievable! Keep us posted on Dani. Sending you a big virtual hug!!!!!
Bab
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Mom, so sorry to hear about Dani. Hope all is well this morning and she is still able to stay on the trial. Not at all okay that the dr office is so unresponsive in an emergency. I just don't understand that.
Thanks all for your supportive words. Good to be reminded of the hope of immunotherapy and I like the idea that the faster things pop up the faster they can disappear. I'm banking on that. I am very thankful to have my MO. I don't think I mentioned that she did all of this at 10 pm on a Sunday evening. Quite amazing.Enjoying the leisurely morning before my noon appt.
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Mom, I hope that Dani has been given some answers and treatment by now. She has been through so muc, as have you. I am lifting you both up in prayer. Let us know how things are going when you have a chance. (((Hugs))).
Kaayborg, Your onc sounds amazing. I hope that your new treatment plan knocks out those cancer cells quickly. I look forward to reading your updates.
Hugs and prayers, Lynne
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Kaayborg. What is the name of the immunotherapy you will be taking? Is it a pill? Whatever it is, I'm praying it will work ASAP. I have a very caring MO. too. I knew I would like her before I met her. I live in the Dallas area, Texas Oncology has the monopoly here. My MO, however, has gone out on her own. I was impressed by that and chose her. I think she would be like your MO if I am ever in your situation. She really listens and she cares about me. And, she's smart.
Z. Wherever you are, I thought you would want to know that I start today at the CARE exercise program. It's free for 16 weeks to cancer patients in treatment. For some reason, I'm nervous about it. I'm hoping it will help me feel better and help with the fatigue.
Life keeps on happening to my little family. Two weeks ago today., my daughter in law's father died. He literally dropped dead. We still don't know the cause. It takes eight weeks for the autopsy report to get back. Everyone is still in shock. He was only 64 and was not sick. To say the past two weeks has been stressful is an understatement.
Yesterday, the trainer asked if I needed help with stress, YES,I believe I do.
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Grannax, it is nivolumab (Opdivo). IV administration over about 60 minutes. Still not sure whether we'll be combining with eribulin, having it as a back up if eribulin doesn't do anything, or perhaps using it to prime the pump for eribulin. Just read this...
http://oncologypro.esmo.org/Meeting-Resources/ESMO...
...which supports the idea of priming. I know we can't start nivo right away because it will take too long to get approval for it off-study/label.
So glad you have such excellent care as well!
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NOV1 - you have been through it. My right lung, upper lobe collapsed in summer 2016 until a few months ago. I had terrible left back pain, didn't understand until the scan revealed. Breathless, couldn't sleep on my right side, would cough and see stars literal stars.
MomATT - We're with you two. Is this a new doctor / center for her?
Have been off Xeloda for three weeks, long story - starting today. My liver has felt all right for days now. When I take the Xeloda, if there are dying cancer cells then I feel pain. Will see how it goes.
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Bluebird: I just started carbo and Gemzar for my Liver Mets. I was interested in your previous comment about pain when your Xeloda was working and cancer cells dying.
I have some pain at times and I think it is too early to say my pain is from dying cancer cells or progression on the chemo. I have had 1 round of chemo and begin 2nd cycle Oct 3rd. I am sure hoping the pain is from dying cancer cells and not progression. Really scared that the chemo is not keeping up with the cancer. Next MRI is end of Nov or beginning of Dec. My oncwill do TM on Oct 3rd and see if decreasing.
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Kaayborg: just checking to see how your appointment went today.
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Go Grannax - Exercise is always a good idea but I really understand being nervous. Are we sick, are we not sick? Weird disease. But get out into that program and go for it. It will help.
MomATT - You lucky duck! An actual doctor on call! The message at my center says call 911.
>Z<
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I was away for a long weekend, so I'm three pages behind here. Was thinking about Z's trip, saw the latest post, and just wanted to jump in and offer my support to you, Zarovka, as you process first signs of progression and head for cutting-edge treatment in Japan. I hope your treatment experience goes smoothly, that you get to enjoy some great sightseeing, and that your daughter gets to see a Totoro.
Back later to catch up.
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lisbet: how are you doing? Have they changed your treatment yet? I am newly dx Liver Mets as well and am anxious if my chemo is working or not. I am TNBC so limited on some future options. Lifting you up today and everyday to give you strength
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Wow kaayborg, that was an abrupt about face on Tx. i am glad your Onc is so on top of things and hope this is a winner for you.
You too Z! Off to Japan for a whole new protocol. You are truly amazing. Have a great trip, we are all very interested in this whole concept.
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I'll just post this friend/family update to you here as well, my online friends and family:
I didn't expect that the scans would be good but turns out they were worse than I thought. No measurements to give you about the growth. Basically new tumors are growing so close to old ones and to each other, they cannot accurately measure them. Tumor load is estimated to be worse than it was at diagnosis two years ago. Liver function is okay, abnormal and higher still but no immediate threat of failure. However, Dr. Lustberg stated it is very important that this treatment work. Progression is rapid.
We have been considering for some time at what point it would be appropriate to tell the girls that these treatments won't keep me alive forever. Today's news helped us to decide along with the counsel of staff at the Spielman. While we still remain hopeful that I may get a durable response out of eribulin, if I do not, and things progress faster than the next treatment can keep up with, the end will be soon. I feel they deserve the opportunity to process this over time and with us, not alone. The conversation went as well as I think it could have. A horrible thing to have to do but I know God will take care of us all, and we believe it was the right thing to do and the right time to do it.
Things to hope and pray for:
a change in the tumor make up...achieving HER2+ status occurs 30% of the time and gives many more potentially effective treatment options, or anything else that opens doors
insurance approval of immunotherapy off label to add to eribulin, increasing chances of its effectiveness and durability
a liver that tolerates decline slowly so treatments have a chance to be effective
the resiliency of our children...us too
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kaayborg, I'm shocked by this news of so much progression! I hope they can slow it down ASAP. I'm thinking of you and your family. This disease is so horrible!!! Don't lose hope yet, they might have something to keep this at bay. I'm praying for you and your family!
Hugs to you,
Anita
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Kaaborg. I'm so sorry about your progression. And so sorry you had to have that talk with your girls. That's the hardest thing to do! I am hoping and praying that the drs find something that will put a stop to further progression and improves your condition. This disease really does suck!
Sending you hugs
Bab
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Kay (kaayborg)
Heartbreaking news. I've only recently became a part of this blog family but I want you to know your posts are an inspiration to me, full of information, compassion and honesty. It's hard enough discussing this with grown adult children and I can't imagine explaining this to your young daughters. I am sending love and light to you and praying for new doors to open.
Kay (kaylynne)
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Kaayborg . Praying for all your requests. I'm guessing that you'll have to have a liver BX to determine a change in hormone status?
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Hartrish - no, I have the appointment with the doctor tomorrow morning. I just read the scan results for myself. Pretty sure they will give me extra time for the appointment because of the huge progression in such a short time - and really hoping for one of the nice and empathic doctors. (Several of them are so young and besides that they're foreigners and speak a poor Danish).
Kayyborg, so sorry to hear about your progression. Heartbreaking to share the news with your children. Praying for you that you will get the right treatment and have years ahead of you!
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Kaaborg: I am heartbroken for you to hear your news of progression. I know no words will be of comfort, just know there are so many of us thinking of you and wishing you better news and success.
I was originally TN and my liver biopsy returned ER+. Whilst I got 7 months from Ibrance/Anastrozole, I did get some progression in August. I have always worried about the spots in my liver being made up of mixed types. Interesting to hear of change to Her2+. I wonder sometimes whether I would benefit of another liver biopsy on the spots that have grown.
Lisbet: wishing you good news in your appointment.
Sarah
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Kaayborg - chiming in on shocked with your progression, but applaud including family and girls at this point. Rooting for next med (havalen) and TN change to +, when do you start? Also hoping a trial can be in your pocket. Please keep us posted.
(()) Claire
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Kaayborg - thinking of you and sending you love and support. Here for you through it all!
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kaag, I'm so sorry for your setback and am praying it will be just that - a setback.
Z - I hope the trial in Japan goes well for you!!!
mom - thinking of Dani and praying she gets to stay on the trial.
After fairly minimal progression of the liver lesions, I switched from Tykerb/Xeloda to Taxotere/Herceptin/Perjeta. I was having major issues with nausea and diarrhea on X so I was happy to switch. Here's an overview from my blog since I'm too tired to write it again here.
https://2yearsinafricasequel.wordpress.com/2017/09...
If anyone is curious about avera, please contact me
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Kaayborg, I am sorry to hear that the progression was worse than expected. Telling your girls the reality of the situation must have been difficult for you, but as you have said, it was best for them to be aware. I hope and pray that things will turn around quickly with your new treatment. Although insurance companies can sometimes be rigid in their rules, your MO sounds like a person who will present a strong, valid and compelling argument for the approval of off-label use of immunotherapy in addition to eribulin for you. I am sure that you are still digesting all the information, worrying about the future, and holding your family close. No matter how much we know about this disease, nothing can truly prepare us for the news of progression. We are all here to support you. I am praying for you. Prayers are powerful things.Hugs to you and your loved ones.
Hugs and prayers from, Lynne
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Kaayborg,
Know you are in my prayers. It really hurts when we have to bring our kids into this reality. We want them to stay innocent of this pain.
I'm praying that all treatments are lined up and covered quickly and that this treatment combination works so well for you. I am also holding you and your family in prayer in this difficult time.
Mary
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Kaayborg- I am truly sorry you are in this situation. Talking to my kids has been painful, but, as you say-it is important for them to process this with you, through your eyes and relationship with them
Can you appeal to Merck to pay for Keytruda or Bristol-Myers Squibb to pay for Opdivo until your insurance company figures this out? I hate to have you delay while they cogitate. Your doctor may know a "rep" from one of these companies and just appeal directly.
Hoping for the best
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Kaayborg, Zarovka, Momallthetime/Dani and all others who are having difficult days recently, I just wanted to say that although I rarely post/comment, I do nonetheless follow along fairly regularly. You are all so thoughtful, helpful, supportive and inspiring that I want to say that I am thinking of all of you, hoping for the best outcomes (!) and wishing you strength and fortitude as you face the latest challenges that this dreadful disease has thrown at you.
Warmly,
Margarita
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Kaayborg, it breaks my heart to think of you having to have that talk with your children. It must have been one of the hardest things ever. I'm clinging to hope for you. Your liver is still functioning ok, that is good. Your medical team needs to move heaven and earth to get that immuno approved for you, and the Her2 results -- the really sensitive tests. And Nkb's suggestions above are worth trying, too. I hope you have assigned someone to help with follow up as you need to be with your family and not on the phone. How I wish there was something I could do to help...
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Kaayborg, in the article you linked, it looks like two weeks of chemo primes the pump for the nivolumab, so the order you are getting them seems correct.
Openmind, I did the not-so-usual combo of Faslodex + Afinitor for four months. I felt quite good on it, better than on Ibrance + letrozole. Unfortunately the cancer stopped responding to endocrine treatment, but I still believe it was the best thing for me to try next. I wanted a dual therapy and one aromatase inhibitor had already failed. It seems to me that since your SIL has had lung trouble, she ought to start with a low dose of Afinitor if she decides to use it. It's good she is getting the tumor genomics.
Z, how amazing that this angel of a radiologist got you a same-day biopsy. If something is not against the laws of physics, there ought to be a way to make it happen when it needs to happen. Will you get genomic testing from the biopsy?0 -
ShetlandPony, thank you for your input on Afinitor+Faslodex.
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Kaayborg, my heart dropped when I read your post. The conversation with the kids must have been very difficult. I pray for the things in your post and that each treatment will work long enough to get you to the next one available.
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