How are people with liver mets doing?
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Louis, your presence here was invaluable. Thanks for the pics, Karen was one beautiful lady! You and your boys will continue to be in my prayers.
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KD Husband, thank you for sharing your and KD's journey with us. You helped me to appreciate the love and pain our spouses/loved ones/caretakers endure with this awful disease. You are a good man, husband and father.
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Louis, I am glad that you checked in. I have been thinking of you and your sons. It sounds like the celebration for your wife was an opportunity for you and your boys to be reminded how much your wife was loved not only by family, but also by friends and community. Thank you for all the time you spent with us. I, for one, drew strength from your strength and was touched by the love and support you gave to Karen. I continue to pray for you and your children.
Lynne
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Louis, thank you for sharing your journey with us. Thank you for sharing your Karen with us. She was beautiful.
Stefanie
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Louise, Truly a beautiful family. I love being able to make the connection with pictures. You were indeed such a valued contributor here and your love and devotion touched us all. Prayers for you and your family moving forward and run like the wind!
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Louis, thank you so much for sharing. You and your family are beautiful. I am glad our paths have crossed and I will surely keep you and your boys in my prayers always.
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Louis-you and your boys are in my prayers. Thank you for always being such a valuable member of our group and for sending us those beautiful pictures of your family.
Be well always,
Babs
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Louis, what beautiful photos. You and Karen faced a horrible, unfair thief of a disease together, and you shared your story with us here. Love and courage are what shone through, and that has been a blessing to me. May the road rise up to meet you...
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Louis, I will keep you and your boys in my nightly prayers. Thank you for giving us a little more insight into your precious princess and your lives together. I am so very sad she is gone but I do believe in Heaven and I do believe you will all be reunited one day. In the meantime, one step at a time.
With much heartbreak but also much admiration,
Amy
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Louis how sweet of you to think of everyone here. You are an inspiration, Karen was adorable, I could see why she was your princess. The boys are a mixture of you both. You will always have her. You are so right about feeling disoriented, she was your life. How does one adjust to this? You have a great community of friends, family, and faith, it's a good beginning. Thinking of all those that loved her so. You are more than welcome to pop in, you are not fired. One day at a time, hugs.
I must add my special thanks to you, for being there, caring and supporting. You know what that means, so I don't have to tell you.
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Guys, it's been a whirlwind of events.
Dani did get her Enzalutumide, but it came a day short from our scheduled visit to Clinical trial doc recommended by Onco. So she called them up because I remembered something about wash out time, so they told her to hold off. The visit was all right, aside from her Onco not having sent any current info, so was kinda lame. Today i got them all they wanted, and they accepted her. This is for the DS8021A something very new. We had a long convo with NP today, it's very extensive, a lot of time, there are other appointments pending.
Part of the problem is getting communication going with Onco, as life always has a wry humor, Onco's father passed away, just like that, you can't make this stuff up. Yes, of course I feel bad for her. Hmmm but so she is not working understandably, and we are left with not knowing what to do.
Now I am starting to think maybe she should just take this meds. Argh.. this is so messed up. I think anxious left a long time ago, we are way passed it...going to....
And then they ask this stupid question, are you post menopausal? You are not pregnant right? I am telling you I thought i was gonna give her one, WHY would they not bother looking at the records, just the tx alone, would give it away, a lot of them are only given for postmenopausal women, to have to see her face fall, she is so darn young, and i cringe when she has to answer this questions, i jumped i said hmmm, she had an oophorectomy, like do you have to add to the injury. i gotta make sure next time before we go to another winner, i tell them ahead of time - like do your homework.
On the bright side, Linda thanks for sharing your grandnephew how big he got.
Lita love your new set of wheels. Classy!
Shetland how are you coming along?
Deanna so glad you coming about.
To everyone have a great night.
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Mom - I expect they are required to ask the individual ... can't go off the reports. But with the right intake person you may be able to run interference so she gets the answers from you rather than Dani. I think I would collapse if I was answering those questions at her age in her situation ... it is ridiculous and mean indeed, whatever the policies. Dani, however, as you have pointed out, is tough as nails.
I am so thrilled you are in the trial. I know it is work but the supervision and attention she gets will be, hopefully, a lot better. Especially since your Onc has checked out to deal with her Dad.
All I get when I google the drug Dani will be on (DS8021A) is a brake pad kit on Amazon ... this apparently a very new drug. I'd love to research it if you could give me more to work with. I am also glad that Dani is getting something cutting edge ...
I wouldn't worry about whether or not Dani is taking the Xtandi ... these targetted therapies take weeks to build up enough in the system to do anything. Xtandi is not a taxol infusion type drug where you get results in a couple weeks. Focus on eating well, reducing stress, staying positive. These things alone are as effective as any line of treatment. And of course get on that trial ASAP.
Looking forward to more good news, FINALLY Dani is headed to a promising treatment.
>Z<
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Oh my Gosh, you are right. I checked and had a good laugh. No, it's not in the tire dept.
This is the corrected protocol - DS 8201A
I would love to believe what you wrote about Xtandi, so I don't eat myself up. Stress is at grand levels with all these running around and the not knowing.
And yes, i'm gonna make sure the people on Wednesday hear it from me first.
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I am back on the thread after a while. I have been reading but the recent tragedy of Louis and KD saddened me much which kept me from writing on this thread for some time. I have read all the news here though and wishing all of you stable disease or NED for a long time.
It's scan time for my wife again (this Tuesday) and she is right now on Xeloda. Recently her CA27.29 fell from 212 to 133 over a span of 2 months, so we are hopeful. Please pray for her.
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LMWL - Praying for good scans as well as light and love to you and your wife these next few days. I find scans hard whether they are good or bad.
Good to hear from you. Remember that many of us are basically doing well. Not much rhyme or reason to it. But you will find hope here along with terrible losses.
I am expecting you will be adding to the good news soon ... let us know.
>Z<
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Z,
About DS-8201
DS-8201 is an investigational HER2-targeting antibody drug conjugate (ADC) currently in phase 1 clinical development for HER2+ advanced or metastatic breast cancer or gastric cancer, HER2 low expressing breast cancer and other HER2 expressing solid cancers.
DS-8201 is comprised of a humanized anti-HER2 antibody attached by a peptide linker to a novel topoisomerase I inhibitor that utilizes Daiichi Sankyo's proprietary linker-payload technology, offering a unique mechanism of action.2 This linker-payload combination of DS-8201 allows for a higher drug-to-antibody ratio (DAR) of about 8, which may help target low expressing HER2 tumors by supplying more payload per antibody to a tumor.2
For some reason I'm not allowed to post the article link - search for US FDA grants fast track designation for HER2 targeting antibody DS-8201
Here's the clinical trial.gov identifier: NCT02564900
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articles on DS 8201
http://www.daiichisankyo.com/media_investors/media...
Another
http://www.prnewswire.com/news-releases/new-precis...
One last one
https://www.ncbi.nlm.nih.gov/m/pubmed/27026201/
I haven't had time to read them through all the way
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THANK YOU Leftfoot ... here is the punchline from the article you posted.
Preliminary results from phase 1 study demonstrate a 46.7 percent overall response rate and 100 percent disease control rate with smart chemotherapy DS-8201 in a subgroup analysis of HER2-expressing metastatic breast cancer pre-treated with T-DM1 and pertuzumab
-- DS-8201 demonstrated a favorable safety profile and also showed promising antitumor activity in HER2-expressing metastatic gastric cancer previously-treated with trastuzumabTalking to MomATT I know that the subgroup is 9 patients with HER+ MBC, so small. But what a response rate! On late stage patients! And the total trial is much bigger: 130+ participants. So the safety profile is reasonably well defined.
It sounds like a targetted chemo where they attach the drug to an antigen which binds to the receptors on the cancer cells, I am guessing HER2. Much like IMMU-132 but hopefully better suited to the beast attacking Dani.
I like it. From Japan. Just sayin'
>Z<
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Hi!
Momallthetime- I pray for your daughter that this trial will be the one! I am relatively new on this board (unfortunately not to the world of breast cancer) so I'm wondering how old your daughter is? I was first diagnosed at 30, then 34 with a local recurrence then at 40 with mets 12 weeks after giving birth to a healthy baby boy and I'll be 43 in November . It is SO gut wrenching when they ask questions about pregnancy and menopause (ok, this time around I'm over 40 but still feel so young). I know they have to but it doesn't matter. I've been on a trial for 14 months and have shocked a lot of people at the cancer hospital at how good I've been. Had something weird the last few weeks but got super sick with stomach flu last week and as of Sunday I suddenly feel totally normal again. So weird. Have scan on Tuesday. Regardless, they will watch your daughter like a hawk on the trial which can seem scary (I have scans every 6 weeks) but she'll get used to it. Good Luck!! These trial drugs are our future. We want better results and more options to what we currently have!!!
LMLL will be looking forward to reading good news about your wife's scans next week! I have a scan Tuesday too so I'm feeling it's a good day!
I pray for all of us each and every night and just tell myself that more and more options are becoming available to us each day. I always imagine this light switch or power box switch...the switch, which is cancer's headquarters in my otherwise healthy body, gets switched off and that's it....lights out, blackout....time to get outta here!
G'nite y'all
Maria
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Maria, so glad you see yourself as "healthy." Even tho cancer has limited my mobility, I do TRY to think of myself as still relatively healthy, too.
I learned a new concept at my live support group last week. We are "healthy sick" women. This was declared by a woman who is starting yet another trial. She said you have to be "healthy sick" to participate in most trials because if you are "sick sick," you possibly won't survive the trial, particularly if it's an early phase trial where they haven't worked out the dosage parameters yet. The trial Dr's verify that one is "healthy sick" thru blood tests and other tests before they ok the patient to participate.
Gentle healing hugs, everyone.
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Hi Ladies,
Been busy so I haven't kept up with this thread. Wendy I'm so happy for you!! I feel like I worry about all of you!
Hope everyone is doing ok. We do the best we can given our situation.
Louis, thank you for sharing your photos. Thank you for sharing your journey with us. I hope at some point you will find peace from all that your family has been through.
I'm leaving to do some photography in Newfoundland, hoping for puffins and gannets. Wendy I will be thinking of you while I'm there.
Hugs to all,
Anita
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Hi Anita - Looking forward to pictures of puffins.
Lita - Yes. You are healthy. Are you off on another adventure this week?
>Z<
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Bens Mama, if you have been on the trial 14 months, then it must be working! Now let's get good trial news from Momall and Dani, too. Lmwl, that is a good drop in TMs for your wife, so I'm expecting an improved scan for her.
Openmind and leftfoot, thank you for the info on Dani's trial. I've noted it for future reference.
I started Xeloda yesterday.
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Shetland pony- good luck with the Xeloda! How do you feel after day 2?
I went for my pamidrenate today and my onc checked liver enzymes and my ALP is 500 (upper limit of normal is 120)! I get this at a different hospital closer to home so it wasn't my trial onc. My ALT, however, dropped to 56 from 119 (upper limit of normal is 40). I can't wait for or this scan- all this up and down is making my head spin. May be a toxic liver. Anyway, onwards and upwards right? Day by day...day by day. I actualky feel great so we always gotta go by that too!
Has anyone had ALP that high?
Have a nice night ladies!
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Hi all -
Got the scan results today.
Bone scan shows stable disease.
Liver CT shows -
"Increasing size of dominant hepatic segment 2 lesion with a new lesion noted in segment 5 concerning for progression of disease."
Onc is telling this "may be" progression and has recommended PET scan to better assess it.
I am failing to put all the pieces together here. My wife's tumor markers are steadily dropping. So not able understand what's going on. Any words of wisdom or advice will be greatly appreciated
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Lmwl, I answered you on the Xeloda thread, but I'll just say again here that my onc told me sometimes tumors swell before they shrink.
So I have taken two doses of Xeloda and I feel pretty good. It is interesting -- I feel a much bigger ache in my liver today. It hurts to press various places, and I sense that it is perhaps a little swollen. I can think of three possibilities: 1. It's progression from being off any therapy for eight days. 2. My liver is reacting to having to process this new drug. Or 3 -- my preferred explanation -- Xeloda is already kicking cancer butt and tumors are exploding and dying!
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Shetland - thanks for writing back. I hope its just swell and / or dead cells. I am curious though why the onc wants to do a PET to confirm since CT (which has been standard imaging technique for her so far) is usually pretty definitive about detecting cancer.
I am thinking about another possibility. Since its just 2 lesions that are causing problems and rest are stable, can we use something like radioembolization or cyberknife to take out those 2 buggers ?
Shetland - I think what you are experiencing is possibly drug reaction since 8 days is not that long to have enough progression to cause swelling / pain.
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The CT shows shapes of tumors, but it can't show whether they are dead/dormant or alive, so to speak. The PET shows metabolic activity by showing how avidly the tumor takes up the radioactive glucose. There is a thread about local treatment for liver mets called
"Liver mets: resection, ablation, SBRT, Y-90, anything else?"
https://community.breastcancer.org/forum/8/topics/...
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hi Shetland, when I read your post I remembered how on my first week or so on xeloda my liver was sensitive and kinda puffy too but it calmed down once the drug was in my system. I had a 'wash' period too with no meds so I think it amplifies it even more. Number 3 option iS definitely my call! Xeloda is kicking butt
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LMWl
My mo prefers pet scans as they give more and better accurate info. I recently had a Ct due to maybe having kidney stones and it showed liver lesion enlargement. By itself she said no prob but since my TMs went up a lot she ordered me a pet scan now. Wait until you get the pet results !!
Bab
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