How are people with liver mets doing?
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Girls,
I need to hear from all of you who have taken Halaven for liver mets, please let me know how it worked...
Raven
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Raven, I'm on a clinical trial with Havalen and keytruda and just had my first scan which showed it was working on my liver mets......but, since I'm on both and keytruda is an immunotherapy I’mnot sure it correlates with just Havalen alone.
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Raven,
I just moved from Halaven to Doxil, which I started this past Friday. I did 8 rounds of Halaven...it didn’t work for me, sorry, I had progression in both bone and liver mets.
It’s too bad.. it was a tolerable chemo for me.
Good luck
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Babs if you're reading, know I have been thinking of you. I hope nothing is wrong after you having t90 I had hoped it would work for you.
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Raven,
I had good success with Halaven for 13 months. It was a tough regimen for me because of the anemia, but it did a great job on the liver mets while it lasted.
Jennifer
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Kaption, thanks for letting us know about Claire. I am so sad to read this. I, too, had a special bond with Claire. We were on Afinitor together, and then Abraxane together, both doing cold caps. We shared a lot in common, including our profession, and she was just so easy to talk to. Despite knowing how difficult the last few months have been for her - the last time we spoke several weeks ago, she just had 14 lbs of fluid drained and was having trouble keeping food down for a long time - her spirit is so full of life and zest it is hard to fathom that she would ever be gone. She had such a gift of connecting with and engaging people. So colorful.
Babs, thinking of you and hoping you are just busy.
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Hi, I joined breastcancer.org for my sister 10 years ago. Whenever she is starting a new treatment, she has me read her the posts, focusing on the optimistic ones and ones with advice to minimize side effects, and skipping scary stuff because she doesn't want to hear anything bad. Her latest treatment was Xeloda for 9 months, which she actually loved, but at the end of June had progression of her liver and neck tumours and her onc told her to look for a clinical trial. She tried to get into two immunotherapy trials but for various reasons she was rejected. The whole process of trying and getting rejected took >6 weeks, so she has been off tx since the end of June, starting Halaven tomorrow.
Thought I'd post for some company and encouragement for her as things are getting rough. Kaption, my sister too is Her2 equivocal by both measures, so can't get Herceptin in Canada and the doctor said she could not even be treated here if she got it in US. Keytruda as an add-on looked interesting but she wasn't eligible for the Dana Farber trial because of too many previous chemos and Her2 status. Anyway, her spinal bone metastases are really painful now and she can't face a lot of extra side effects so one treatment may be better.
She is ten years out from her Stage 3C diagnosis, with many longer than average treatment responses, but she's feeling sicker and less hopeful than before. Anyone else been there and felt better after starting chemo? Hoping feeling really ill is because of being off treatment and will turn around with Halaven.
IrishTwin
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Raven, I was on Halaven for 9 months. It kept my liver and bone mets stable but I had growth in other areas which is why I changed. It was a pretty tolerable chemo with very predictable side effects.
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MTMILKMAID: my CA 27.29 TM rose to around 5800 when I was first dx with liver mets. MRI showed diffuse liver mets at the time. Started on carbo/Gemzar at that time. TM down to 62 with small amount of cancer in my liver at this time. The CA 27.29 TM has been very reliable and consistent with my MRIs.
Sending prayers and hugs your way.
Tricia
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Sad for the loss of another beautiful lady to this disease. 😢
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Tennille 76- Thanks for sharing I appreciate it. I desided to take the second round of what I was put on for liver met while we wait for pathology. So far I we know it´s BC ER/PR+++ might now be her2 postive but it is faster growing 18% vs. 10 % Ki67. so it is a little different now. Is not answering Taxol. But rather than take nothing and wait I took dose nr. 2 as planned.
I think they may consider switiching again when biopsy results are ready.?? not good to jump around on these meds good to take 2-4 rounds and then see. or what is your experience everyone..
Raven
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Hartrish... Thank you for your response. What I would like to find out is if others have had the extreme rise.... my numbers went up 4,000 points in two weeks. I am sitting over 15,000+ at the moment but still don't look or feel sick. Can the tumor markers be wrong?
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Kaption - Thank you for letting us know about Lalady (Claire). Honestly, I'm shocked! It wasn't long ago that she was traveling and looking forward to her new job. She was such an incredible advocate for herself and so full of life. She was such an inspiration! I will pray for her family. Theresa
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I am so sad to hear of the loss of LALady, Claire. She responded to one of my first posts when I was diagnosed last year with empathy and very helpful as well as hopeful information. I also so admire how she lived her life to to fullest.
Thinking of Claire and all of you.0 -
I’m so sorry to learn about Claire. I had enjoyed her posts and the way she she so fully lived life. Thank you for letting us know Kaption
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Hi All
So sorry to hear about Claire. Our losses really do break my heart.
I have been having lots of issues. The Bc has spread to my lungs stomach and is growing back in my liver. I was just in the hospital twice for internal bleeding. I was taking a blood thinner due to a blood clot in my leg. The had to put an ivc screen in and now I’m off all blood thinners. I’ve lost lots of weight. I’m tired and just manage to work ( thanks to a great boss) and help take care of my grandson ( i can’t pick him up or lift him at all). My right foot is numb so I’m not steady on my feet. But the good news is that my son and DIL and 2 granddaughters have been spending lots more time with us. Here’s a picture of all of us one hour after I came out of the hospital the first time. It was my bday dinner. Being with my family makes the struggle all worthwhile. I am hanging on for more time with my lovesbabs
I will try to post every so often as I do not want you to worry. I really love all my bc sidters
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here’s the picture of all of us
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Babs, It is so good to hear from you, but I am sorry you are having such difficult times. It is amazing that you are still working. The photo is wonderful. You have such a beautiful family. I am happy to hear that your son and his family are spending more time with you. I know your heart is warmed by the presence of your grandchildren. I am lifting you up in prayer and hope that your medical team will get things under control soon. Thank you for checking in. We have missed you.
Hugs and prayers from, Lynne
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Babs, you have a beautiful family and considering what you've been through recently, you're still as beautiful as ever. Please force yourself to eat more, stay strong and positive.
You are in my thoughts and prayers. I wish you and all of us, many, many more years of joyful and peaceful times with ourselves, our families, and our loved one's
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Babs- Beautiful family picture. stay strong. Dónt know you as I just started here in May after reoccurance now stage 4. Hope all goes well for you!
Raven
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Hi all,
Granna X2- Some follow up. I had the liver biopsy on monday. all went well. I was only locally anesthatized. adrenalin at site so it hurt a little. But he got 2 good samples. I have some results. It´s breast cancer. Er +++/ Pr+++ but growing faster Ki67 18.7%. They are running the fish test to see if the her has changed from neg to positive. should be ready on monday at latest.
I got news from Dallas radiologist reviewed my CT scans I don´t qualify for Y90 " it looks like there are too many segments of the liver involved. The Y90 might actually do more harm than good." That is a direct quote from them. so it´s chemo only for me at this point. I have done 2 rounds of the EC she put me on. Got a CT coming up end of sept. after 3 rounds. also may change with results of biopsy.
Raven
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Babs, it is good to hear from you because I've been missing you, but I'm so sorry to learn of your hard times. Thank God for your wonderful, loving children and scrumptious grandchildren. They really can make an astonishing amount of life pain somehow seem to balance out for a mother, so that we will push through hell just for the joy of that next visit.
Your family is beautifultruly special people. Wonder where they got that from? 👊 👸🏻
I know how it hits me sideways sometimes to be so so sick and have people say “but you LOOK so good!"— but Babs, you are amazing and you look amazing. Praying for better days ahead. Do pop in when you can. Hugs.
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I, too, am very distressed to hear about LALady/Claire. I was always grateful for her insightful posts. Thanks for keeping us posted, Kaption. It's a part of MBC that is always distressing ..... It's hard to get your head around the losses.
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Beautiful family pic, Babs! Thanks for sharing. be well....
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Beautiful picture, Babs. So sorry to hear of your struggles. Hang on to that love around you.
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Babs Love seeing your precious family. I can see how much they love you. Since we are fellow y90 girls, I feel close to you. I am so very sad that tumors are growing in your liver in spite of y90. 😢 I hope there is more they can do for you to help you feel better. Let us know what's happening, as often as you feel you can.
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Raven. So glad to hear that BX is over. You got the results fast. Even though you don't get to have the y90, I'm so impressed that went right to the source and got a definitive answer. Now, you can move on with confidence with chemo with no regrets.
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Babs,
We were so worried about you! Is the IVC screen funner than jabbing yourself with blood thinners?
Be good to yourself, and give yourself permission to rest and heal. Going and out of the hospital is exhausting.
Much love,
Jennifer
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Lovely family pic Babs. Family are so special, they give us a reason to keep going
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All, It is with a heavy heart that Keetmom, ( Amie) has passed away. I have not been on bco for some time now, and some of us go back for a number of years. I thought you'd like to know. Too many losses lately.
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